Best Santa in town!

Hanukkah Celebration

Trying to escape the crib...

Trash-the-Trach Trophy

Exercising

On the move...trying to escape his crib!

Learning to clap...

Hospital visit...

Brody's First Day of 2nd Grade, Fall Baseball & the Orioles!

Each scar represents another obstacle overcome:

• 1st CDH Repair
  
• 2nd CDH Repair
• G-J Tube & 3rd CDH Repair
• End of Shunt Tubing
• Broviac Central Line
• Chest Tubes
  
• PICC & Arterial Lines (scars not pictured)
  

On March 9th, 2016, a story about toddler name Logan Miceli was posted in the Russell Street Report/Lombardi's Way. 

Logan Miceli Played Like a Raven 

Logan was born in 2013 with a congenital heart disease. He survived two open heart surgeries and was thriving until he received another devastating diagnosis.  Sadly, he passed earlier this month after losing his battle to leukemia. His parents have turned their loss into something incredible and founded Logan's Never Be Alone Foundation. This non-profit foundation "aims to provide financial assistance to hospital parents, so that they may comfort their children and be more involved in their everyday medical care."  Through our experience, we personally struggled with the difficult decision to continue to work and satisfy our financial obligation or stay at Caleb's bedside. It was a heartbreaking decision, but returning to work was our only option, which meant Caleb would spend more hours alone in the hospital than with us by his side. Caleb was hospitalized for nearly eleven months. This foundation will help ease the financial suffering of families, so that parents may remain with their sick children at Johns Hopkins Hospital, where Logan, Caleb and many other children from around the world go to seek medical treatment.

Tony Lombardi wrote "I never met Logan but I will never forget him. His story, his smile, his selfless parents, taught me something about life’s simple joys. And through their actions and words they reminded me that such simple joys are all around us. We only need to look for them." He could not have said it any better...

This is an amazing cause and together, I hope we can help fulfill Logan's legacy. If you would like to donate, please CLICK HERE!

Recovering in the hospital and still smiling...

When we learned of Caleb's CDH prognosis at an ultrasound on May 13, 2014, the excitement of our pregnancy was suddenly replaced with  an overwhelming sense of uncertainty.  At the time, we had a happy, healthy and very energetic four year old son, Brody.  He loved LEGO minifigures, practicing his golf skills, being Daddy's fishing buddy, playing America's pastime: Baseball, and watching his favorite movie 'The Sandlot'.  Brody was the highlight of every moment we spent outside of work and of course, sleeping and we had hoped to make him a big brother one day. 

We were on our 6th pregnancy, after losing four, due to an ectopic/tubal pregnancy and three miscarriages.  After two years of trying, we began to question how much longer we could take of the vicious cycle of excitement, anticipation, and grief.  Although we were physically and emotionally drained, each loss was essential in making us stronger as a couple, better parents to Brody, and most importantly it was a constant reminder that we had already been given the greatest gift of all...one healthy little boy.

The rest is history as our 2nd boy, Caleb, turned one on July 19th.  If I had to describe Caleb's first year and the few months before his very early arrival…I would use the word BLUR!  We educated ourselves on what it meant to have a child with a congenital diaphragmatic hernia, prepared for the unknown and worst possible outcome, and hoped with all we had that our baby boy would be able to survive this devastating birth defect.  CDH occurs when a hole in the diaphragm fails to close and allows the contents from the abdomen (stomach, intestines, and/or liver) to migrate into the chest.  When the abdominal organs are in the chest, it prevents the lungs from developing normally, resulting in pulmonary hypoplasia (or underdeveloped lungs).  Since the lungs are one of the last organs to mature, the doctors stressed the importance of delivering as close to full term as possible.  Caleb, on the other, had a different plan and made his debut prematurely at twenty eight weeks.  Our celebration and joy over the birth of Caleb was brief as this brought about a new set of challenges and would further compromise his ability to survive. 

As parents, Caleb's first year encompassed every emotion from one end of the spectrum to the other...over and over again.  With his ever changing status, we were beyond thankful for every moment spent with him and happy for every hurdle crossed, but these times were often accompanied with feelings of sadness, helplessness, stress, anger, complete exhaustion, and most of all we feared losing our baby boy.  On one of Caleb's worst days ever, I vividly remember a conversation with one of our favorite NICU doctors when she spoke about palliative care.  To palliate means to relieve and palliative care is care designed to make your baby as comfortable as possible when it is clear that further treatment aimed at a cure is neither possible nor effective.  Knowing this was a possibility was one thing, but hearing those words was heartbreaking.  Caleb must have sensed our devastation that night as he recovered from that day and continued to fight through many more obstacles and setbacks. 

Caleb was a few days shy of eleven months old when we finally brought him home on June 16th!  In his time spent between Johns Hopkins Hospital and Mt. Washington Pediatric Hospital, I visited my buddy on all but five days.  I could not come to terms knowing that Caleb was alone and in his crib for the majority of twenty four hours a day.  But, as a parent of a sick baby, I was often torn between spending time with Caleb in the hospital and maintaining my other family and professional responsibilities.  I went back to work full time when Caleb was only five weeks old and struggled to balance my time between Brody who had just started kindergarten and Caleb who needed us to remain his biggest advocates.  Brody knew that Caleb was sick, but he did not fully understand why it meant we had to be so much more absent from his life than normal.  We worried that he would begin to resent us and Caleb, but instead he matured as a little boy, welcomed his baby brother home, and taught us a powerful lesson on resilience.  

Until Caleb came home, I felt as if my life outside of caring for him, had stopped.  It was an exhausting time for all of us, but we somehow made it and we are enjoying our 'family of four' status at home!  Thank you to my amazing husband for being my rock and keeping it together at times when I was falling apart, for being patient with me and always understanding my need to spend as much time with Caleb as possible.  There is no other person I would have wanted to walk with on this journey.  To our parents, siblings, extended family and friends, we will be forever grateful for your guidance, support, and unconditional love.  Your help with Brody, countless hours visiting Caleb and keeping us company in the hospital, thoughtful messages, and meals were essential in getting us through the past year.  Lastly, there are no words to express our sincere gratitude to the team of doctors, nurses, therapists and staff at Johns Hopkins and Mt. Washington…Caleb made it to where he is today because of all of you!  Through this experience, we have met some incredible people and gained friendships that will last a life time. 

Due to Caleb's early arrival, he now gets to celebrate his birthdays with his awesome big brother.  This year, Brody turned six on July 18th and Caleb made it home just in time for his 1st birthday on July 19th.   Brody had a sports themed party and we decorated Caleb's cake with an airplane (only fitting for CDH awareness which is represented with clouds).

Check back soon for an update and status on Caleb's progress over the past few months. Spoiler alert: He has been vent free and breathing on his on for almost one month and is only requiring a minimal amount of oxygen.  Life with him at home has been fun, crazy and of course full of Caleb complications.  It has encompassed a lot of therapies, doctor's appointments, emergency room visits, a 911 call and an ambulance ride.  Now, our only goal for the changing season is to get him healthy and keep him healthy…this is already proving to be quite the challenge and it's only Fall.  Although he has overcome the initial complexities of CDH and prematurity, we are constantly reminded of just how fragile he remains. 

Timeline of events and memories on our CDH journey:

• February 2, 2014 ~ Positive Pregnancy Test
• May 13, 2014 ~ Fetal Anomaly Scan (showed a baby boy with CDH)
• July 19, 2014 ~ Happy Born Day (12 weeks premature)
• August 12, 2014 (24 Days Old) ~ Surgery #1:  Initial CDH repair and our 1st time holding Caleb.
• September 3, 2014 (46 Days Old) ~ Surgery #2:  Placement of Ventricular Peritoneal (VP) Shunt
• October 8, 2014 (81 Days Old) ~ Caleb meets big brother, Brody, for the 1st time.
• October 9, 2014 ~ Original Due Date
• October 14, 2014 (87 Days Old) ~ Surgery #3: Laser Eye Surgery for Retinopathy of Prematurity
• October 15, 2014 (88 Days Old) ~ Surgery #4:  Repair of 1st CDH Re-herniation
• November 14, 2014 (118 Days Old) ~ Surgery #5:  Tracheostomy
• December 10, 2014 (144 Days Old) ~ Caleb is held by big brother, Brody, for the 1st time.
• February 10, 2015 (206 Days Old) ~ Transitioned from Johns Hopkins Hospital NICU to Mt. Washington Pediatric Hospital.
• April 19, 2015 ~ International Day of Congenital Diaphragmatic Hernia Awareness.
• April 30, 2015 (285 Days Old) ~ 1st Leisurely Trip Outside
• May 5, 2015 (290 Days Old) ~ Surgery #6:  G-J Tube and Repair of 2nd CDH Re-herniation
• June 16, 2015 (332 Days Old) ~ Transitioned from Mt. Washington Pediatric Hospital to HOME.
• July 18, 2015 - Celebrated Broyd's 6th Birthday
• July 19, 2015 ~ Celebrated Caleb's 1st Birthday

When I began gathering my thoughts for this blog, I realized soon after that despite having the best news yet, it would be the hardest to write emotionally.  On May 13, 2014, we received the devastating news that the baby boy I was carrying had a congenital diaphragmatic hernia (CDH) and he was given a 50-70% chance of surviving after birth.  CDH occurs when a hole in the diaphragm fails to close and allows the contents from the abdomen (stomach, intestines, and/or liver) to migrate into the chest.  When the abdominal organs are in the chest, there is limited room for the lungs to grow, which ultimately prevents the lungs from developing normally.  This CDH prognosis began a culmination of some of the most trying and rewarding times in our lives.  At the time of this news, we had a very healthy four year old boy, Brody, at home and had recovered from the loss of four other pregnancies.  We were faced with what seemed like an impossible decision on how to proceed with this pregnancy knowing that this would be our 6th and final attempt at making Brody a big brother.  Although CDH occurs in 1 of every 2,500 live births in the U.S., there is very little known about this birth defect and the long term impact it has on a child born with it.  With the support of each other and our amazing family and friends, we accepted the diagnosis and began creating our CDH story.

The severalty of our baby boy's condition was made even more complicated when he made his debut three months premature on July 19, 2014.  The first few days and even weeks remain blurred as we tried to process the magnitude of his illness and helplessly watched him struggle for every breath.  He quickly earned the reputation around the Hopkins NICU as "Chronically Complicated Caleb".  I remember vividly day twenty-four when we held Caleb for the first time just a few hours before he would undergo his initial CDH repair surgery.  Although this surgery proved to be life saving, we were told that morning to prepare as if it could be our last day with him.  We got our happy ending that day, but it is hard not to think about how it could have easily been the worst day of our lives.  Since that day, Caleb went on to recover from five more surgeries and bounced back from numerous blood infections, viral infections, pneumonia, and too many blood transfusions to remember. 

On June 16, 2015, we brought Caleb home for the first time and began our new "normal" life as a family of four.  In his 332 days of hospitalization, we were fortunate enough to be able to visit with him on all but five days.  Our daily routine was draining and sometimes felt overwhelming, but we knew the importance of remaining Caleb’s biggest advocate.  Unfortunately, spending time with Caleb meant less time with Brody and we learned quickly that balancing our time between a healthy and sick child would be the most difficult part of this process.  Brody’s resilience over the eleven months was truly remarkable and he welcomed his baby brother home with open arms and a huge smile.  I will never forget the first night we were home when he said to me “I didn’t know, but I really love Caleb.”  This made me realize just how far we had all come and grown through this experience...

In the weeks since Caleb’s discharge, he has adjusted well to his new room, caretakers, therapy, barking dogs, and a crazy family.  He is learning the joys of being a baby and we are treasuring endless hours of play time, snuggles, going for walks and the perks of just being a family in our home.  Prior to leaving Mt. Washington Pediatric Hospital, the team focused on weaning Caleb from the vent and his progress has been incredible.  He still requires a minimal amount of oxygen, but he is breathing on his own for twelve hours a day.  The timing was perfect as it makes life at home a bit easier since he is only vent dependent at night.  Caleb will be scheduled for a sleep study in the next few months to determine if he is strong enough to be weaned from the vent completely.  Breathing on his own during the day means less tubes and this has been crucial for his development.  He receives therapy a few times a week and is beginning to grasp the concept of tummy time, sitting up, and rolling over.  Eating by mouth remains one of Caleb’s main challenges, but we will continue to introduce pureed foods until his feeding clinic begins in September.

Caleb requires around-the-clock care and we have been extremely lucky to find a few wonderful nurses who treat him as if he was their own.  For now, we have been granted with day shift hours during the week while we work and night shift hours for when we are sleeping.  There are many times, however, when the responsibility falls on the two of us and we wouldn’t change that for anything since it means he is home.  This only makes getting out of the house more complicated, but we are hopeful that it will get easier with time. 

A day with Caleb entails: 

• Reacting to the alarm of his pulse oximeter, which monitors the oxygen saturation in his blood and his heart rate.
• Reacting to the alarm of his vent.
• Transitioning him on and off the vent every twelve hours.
• Preparing his feeds for a twenty-four hour period.
• Filling his feed bag every four hours.
• Changing his tracheostomy ties and cleaning his neck each night.
• Administering medicine through his G-J tube almost every two hours.
• Restocking and ordering supplies.
• Attempting to feed him by mouth three times a day.
• Bath and play time.

We will be forever thankful to everyone at Johns Hopkins Hospital and Mt. Washington Pediatric Hospital that not only played a role in Caleb’s amazing progress, but also helped push us through the darkest of moments.  As much as I would like to forget the countless hours spent in Caleb’s hospital rooms, I believe the entire experience has made me a better person and mother.  Best of all, Caleb’s cuteness and our determination to be by his side day in and day out enabled us to build friendships that will last a lifetime.    

Throughout this journey, we learned the importance of reaching out to others.  We met children dealt a similar prognosis at birth to Caleb, who were thriving despite having overcome a magnitude of challenges.  We are grateful to their parents for sharing their story and giving us a sense of hope, especially at times when fear and sadness seemed to take over.  We also found support among other parents currently struggling to cope with and care for their sick baby.  I will never fully understand or comprehend why some of their stories ended with loss, but after months and months of uncertainty, it is a constant reminder that Caleb is still very fragile and our days with him should never be taken for granted.        

Caleb has been home for one month and it has been incredible.  His smile can brighten up a room and his happy personality seems to be contagious to everyone around him.  Our only wish is that he remains healthy so he can continue to get bigger and stronger each day.  Today, Caleb attended his 1st Johns Hopkins NICU graduation party.  We will be continuing the celebration this weekend as Brody turns SIX and Caleb turns ONE!  It has been a crazy year, but one of which we will never forget.  Thank you again to our family and friends for your continued love, support, and guidance…

Happy Birthday to our boys!  

Today marks almost two months since my last blog and it is hard to believe just how fast time is passing by…
 
On May 19th, we celebrated ten months with our miracle boy. It has been an incredibly long journey, but thankfully Caleb has overcome every obstacle and bump along the way. Caleb is a very happy boy and he can light up a room with his infectious smile. His resilience is amazing and we are reminded daily of just how far he has come. 
 
For the most part, since our transition to Mt. Washington Pediatric Hospital on February 11th, things have gone smoothly. However, it would not be Caleb without his share of complications. Caleb has continued to heal and is getting bigger and stronger each and every day. Caleb weighed 3 pounds 2.09 ounces at birth and is now weighing in at 18 pounds 13 ounces.  Caleb continues to receive physical therapy, occupational therapy, and speech therapy almost daily and he especially enjoys his play time with child life.  Caleb is usually content hanging out in his crib watching his mobile and playing with his rattles and rings that hang from his activity gym.  He also enjoys his custom rocker, playing on his mat, bath time, visitors and of course snuggle time.  On April 30th at 285 days old, we were finally able to take Caleb for a leisurely stroller ride outside.  Since he had only gone outside for transports back and forth to Johns Hopkins for appointments, this was an exciting time for us, but he was a bit unsure of the sunshine.  We walked around Mt. Washington, put his feet in the grass for a few mintues, and captured this experience and his reaction on camera.  We are looking forward to many more of these firsts for him.
 
Caleb has had additional follow-up appointments with cardiology and neurosurgery.  The echocardiogram showed that his heart is functioning normally and that the pulmonary hypertension that he once had was fully resolved.  This is great news but since this is something that can change momentarily, he will be monitored closely and he will continue to take a medication to help relax and widen the blood vessels in his lungs to decrease the pulmonary blood pressure to his heart and improves its function.  His head ultrasounds have also remained stable and they have made a few adjustments to the setting on his shunt.  He is at the highest setting meaning less fluid is being drained.  Caleb will have repeat head ultrasounds every 1-2 months to ensure that the shunt is working properly as these often need to be replaced within six years.  
 
Before leaving Johns Hopkins, we had a family meeting with Caleb's general pediatric surgeon and he had stressed the importance of letting Caleb heal.  Knowing the difficulties of what another surgery would entail, he had made the decision to send Caleb to Mt. Washington with a nasogastric tube (NG tube), which is a special tube that carries food and medicine to the stomach through the nose.  However, as Caleb began to get better and better each day and there was talk about sending Caleb home, there was a huge concern that the NG tube was not ideal for an at home setting.  One of the most common complications of enterrally fed patients through an NG tube is aspiration, which can ultimately lead to pneumonia.  The NG tube can become malpositioned during routine use and since Caleb will be on the go when he comes home, this was not something the doctors were willing to risk.  

So, after several conversations between Caleb's doctor at Mt. Washington and his surgeon at Johns Hopkins, Caleb was set to undergo his 6th surgery to have a gastrostomy-jejunostomy tube (G-J tube) placed.  A gastrostomy (stoma) is a surgical opening made through the skin of the abdomen (belly) and into the stomach and the G-J tube is a “tube within a tube” placed through this opening.  One tube ends in the stomach and the other extends into the jejunum (the small intestine).  This allows food and medicine to be given directly into the stomach or jejunum instead of through the mouth and can safely be done at home.  Hopefuly, the G-J tube will be temporary and will allow Caleb to get enough nutrition to grow, develop, play, learn and recover at times of illness.  Caleb's original surgery date was postponed due to him contracting a norovirus infection, which was characterized by a fever and the sudden onset of severe vomiting and diarrhea.  This is highly contagious and occurs most frequently in closed environments such as hospitals.  Caleb's symptoms lasted 4-5 days and the virus seemed to make it's way around Mt. Washington infecting staff and several other babies.  After what felt like an eternity, Caleb's surgery took place on May 5th. The surgery to place a G-J tube is typically pretty quick and simple, but Caleb's lasted about four hours and was much more complicated than expected...of course!  Due to Caleb's congenital diaphragmatic hernia (CDH) and the displacement of his abdominal organs, his stomach was not easily accessible.  Although the end result was the placement of Caleb's G-J tube, it entailed making an additional incision which was utilized to move his colon and kidneys, correct the malrotation and twisting of his intestines, and a 2nd CDH repair.  While performing the surgery, Caleb's bowel was damaged and three centimeters had to be removed.  Caleb's recovery was longer than anticipated, but thankfully his respiratory status remained stable.  In order to administer his nutrition and fluids while his abdominal area healed, a central line was placed and caused his next setback a few days later.  Caleb had suddenly spiked a fever of 104°, which remained on and off for days.  It was determined that Caleb had a central line blood infection and he received a seven day course of antibiotics while at Johns Hopkins.  In the past, Caleb had developed severe sepsis from a central line infection and as a result, he coded and needed chest compressions.  So, as you can imagine, this was an extremely scary time, but once again, he bounced back and made a full recovery.  When Caleb arrived at Johns Hopkins for his surgery, he was completely wean off of his pain and sedation medication (clonidine, valium, and methadone) for the first time in his life.  The weaning process had been long and difficult at both Johns Hopkins and Mt. Washington so it was difficult knowing that another surgery meant more drugs to control his pain.  We are three weeks out of surgery and Caleb is still receiving oxycodone, but the hope is that after another slow wean, he will get his last dose by the end of the week.  

Caleb has since been transported back to Mt. Washington and is back to himself again.  His therapies have been restarted and they are attempting to bottle and spoon feed again.  For kids with CDH, feeding by mouth is a struggle and it could take months to even years before Caleb is receiving his full daily nutrition this way.  In the meantime, he will be on continuous feeds through the jejunum port of his G-J tube and medication will be administered through the stomach port of his G-J tube.  No matter how long this takes and how frustrating it may be at times, we will continue to live by our motto from the beginning of this journey...slow and steady wins the race!

The talk of discharge has surfaced and it could be right around the corner as long as the little guy can stay healthy!  Caleb has been approved for nursing, but typically only night hours are given so we will need to fight for day nursing shifts since we must continue to work.  I wish, as his parents, we could take over his care at home but unfortunately this is not an option.  Finding a reliable nursing agency is hard, but it is even more difficult to locate qualified nurses in our area that can meet Caleb's needs and who have experience operating a vent and working with a child with a tracheostomy and G-J tube.  He will obviously remain Mt. Washington until around-the-clock nursing can be arranged and we can fully trust those individuals with Caleb.  This is the most exhausting and stressful aspect of him coming home as we have heard many horror stories of families in the same position.  We are continuing to take advantage of the many training opportunities at Mt. Washington to make certain we are capable of acting in an emergency situation and performing some of the necessities such as administering medication and feeds through his G-J tube, changing his tracheostomy strings (holds the trach in place) twice a day, and inserting a new tracheostomy once a week.  In an attempt to make things easier for when he comes home, Caleb's doctors are trying to make a few weans on his vent, but only time will tell how he will progress and handle the changes.

More to come soon...

Keep fighting, Caleb and stay healthy!!!

Our transition to Mt. Washington Pediatric Hospital has been very smooth. Most importantly, Caleb has adjusted well and receives  physical therapy, occupational therapy, and speech therapy almost daily and he especially enjoys his play time with child life.  

Since my last post on February 11th, Caleb turned eight months old and has made huge strides.  He has been weaned completely off of methadone, which he has been receiving since birth to help with pain and sedation and his valium has been stopped as well. Caleb has also been receiving clonidine to help relax his blood vessels and help with withdrawal symptoms from the other narcotics.  After an attempt to stop his clonidine last week, he became extremely irritable, restless, and difficult to console.  Therefore, they will continue to work on weaning him from the clonidine over the next few weeks.  Due to Caleb's withdrawal, the weans have been one of the hardest and longest battles for him, as well as one of the most difficult things to watch as a parent.  Hopefully, this part of his battle will be over soon and we can begin to focus on just his daily needs with regards to medication and therapies.

For the most part, Caleb is usually content hanging out in his crib watching his mobile and playing with his rattles and rings that hang from his activity gym.  He also enjoys his custom rocker, swing, playing on his mat, bath time, visitors and of course snuggle time.  A huge milestone came when Caleb was first introduced to a bottle and solid foods at 215 days old.  Currently, Caleb is fed continuously throughout the day via a nasogastric tube (NG tube), which is a special tube that carries food and medicine to the stomach through the nose.  The challenge with feeding Caleb by mouth is that he has a sensitive gag reflux and he must re-learn how to suck (since he forgot after not using this function for several months while in the NICU).  Although he doesn't love feeds as much as some of those other things, he is progressing at a slow and steady pace.  In any given day, Caleb may take several very small spoonful's of carrots or squash and about 5-10 ml's of milk utilizing a special nipple for the bottle.  To put slow into perspective, there are about 29.57 ml's in an once and he receives a total intake of thirty ounces a day, which is equal to about 888 ml.  This sounds exhausting and the next few months will be a struggle for all of us as Caleb learns to feed by mouth, but we are just thankful for the little amount that he is accepting and hope that he continues to progress each day. 
 
While at Mt. Washington, Caleb has had follow-up appointments with cardiology, neurosurgery, and ophthalmology.  The echocardiogram was improved and remains stable and they will continue to monitor his heart function and pulmonary hypertension.  His head ultrasound was also stable and they made a minor adjustment to the setting on his shunt.  Caleb's eye exam once again proved that his eyes responded successfully to the laser surgery (also called photocoagulation) he received to correct his retinopathy of prematurity (ROP).  We are extremely happy to report this great news and will be scheduling additional appointments with these specialists in the next few months.  Our main concern is keeping Caleb healthy as any change could hinder his respiratory status, thus affecting his heart and lung function.

Due to Caleb's complicated diagnosis and current health status, he will require a tracheostomy, vent, oxygen, and  NG tube at all times when he is initially released to come home.  We are hoping, however, that all of these things are only temporary and he will be able to function without them in the future (most likely a few years).  They will attempt to find his "happy" place, which will give him the time he needs to heal, grow, and get bigger and stronger.  Although a discharge date has yet to be determined, we are preparing for around-the-clock nursing care for Caleb.  Also, we are taking advantage of the many training opportunities at Mt. Washington to make certain we are capable of acting in an emergency situation and performing some of the necessities such as administering medication and feeds through his NG tube, replacing his NG tube when he decides to pull it out, changing his tracheostomy strings (holds the trach in place) twice a day, and inserting a new tracheostomy once a week.  As you can imagine, all of these things are very stressful but we are becoming more and more comfortable.  We have converted our living room into a nursery for Caleb to accommodate a nurse, his many supplies, and it is even big enough for him play (when he feels up to it).  We are ready to have both of our boys at home together and are hopeful that with a little bit of adjusting, it too will be a smooth transition for Caleb when the time comes.  This will become our "new" normal.

STAY healthy and keep fighting, Caleb!!!

Caleb's first attempt at taking a bottle.
~ 215 days old.

We are happy to report that the last month has been filled with many good days and priceless moments. We have enjoyed playtime with Caleb, reading to him, giving him baths, and of course snuggling. He is getting bigger and stronger every day and now weighs a little over sixteen pounds.  He's our adorable and very chunky little boy...as you can see from all of his rolls!  

Caleb has been transitioned to a conveniently portable advanced ventilation system for patients needing long term support. Although he is on minimal settings for his age and size, he will remain ventilated to allow his lungs sufficient time to grow. The hope is that this is only temporary and that he will be strong enough one day to breathe on his own. They have also made strides with regards to weaning him from his pain and sedation medications, but because of his doses and the fact that he has never gone a day without them, this is a difficult and slow process. As parents, watching your child withdraw (through no fault of your own) is extremely hard. After each wean, Caleb often becomes restless, irritable, has trouble sleeping, and is sometimes cranky and difficult to console. Overall, he has come a long way and after a discussion with Caleb's general pediatric surgeon, the decision was made to transfer him to Mt. Washington Pediatric Hospital. At this time, his surgeon does not want to perform any additional surgeries, due to the extensive amount of scar tissue, unless it is absolutely necessary in the future. Caleb's current hernia is stable and is not causing him any distress. Also, his follow-up echocardiogram was improved and his head ultrasound remains stable. Even after Caleb leaves Johns Hopkins, he will have regular appointments with pulmonary, neurosurgery, cardiology, and ophthalmology.

Yesterday, we said goodbye to the Johns Hopkins NICU and we began the next part of Caleb's journey at Mt. Washington Pediatric Hospital. Mt. Washington is an affiliate of the University of Maryland Medical Center and Johns Hopkins Medicine and they provide transitional care and specialize in healing, growth, and child development. During Caleb's 206 days in the NICU, he overcame many infections and five surgeries including two CDH hernia repairs, placement of a VP shunt to resolve his hydrocephalus, laser eye surgery to correct his retinopathy of prematurity, and a tracheostomy procedure. There were many dark and trying days, along with countless setbacks, but he surpassed it all and his progress is incredible. Although Caleb's fight played a role in his recovery, he would not be where he is today without the entire NICU team. Luckily, everyone fell in love with Caleb, and because of that, we have met many great people, and created lifelong friendships. We will be forever thankful and hope that with each milestone Caleb reaches, they realize just how much of an impact they have had on not just Caleb but every baby that has passed through the Johns Hopkins NICU. The move was bittersweet...we are happy that Caleb is healthy enough to be taking this next step, scared and nervous to be starting over with a new team of doctors, nurses, and respiratory therapists, and most of all sad to be leaving such amazing people with whom have become like family over the last seven months. It will be strange going to a different hospital every day, but this also means that we are hopefully one step closer to having Caleb at home. We do not know how long Caleb will remain at Mt. Washington as their primary focus will be to wean Caleb completely off his remaining pain and sedation medication, to determine a plan for his feeds, and to help with his development. He will receive physical therapy, occupational therapy, and speech therapy on a regular basis. There are still many things to work out in terms of at home nursing care, but we are looking forward to the day when having Caleb home becomes the new normal. 

Now, he just needs to STAY healthy and keep fighting!!!

This week marks three weeks (sorry for the blog delay) since Caleb was in respiratory distress and was moved to the Pediatric Intensive Care Unit (PICU) at Johns Hopkins Hospital.  It has been tough watching Caleb fight through yet another tracheostomy infection and pneumonia.  This time the circumstances were much different as his oxygen requirement increased suddenly and his pulmonary hypertension was at its worst.      

Caleb arrived in the PICU on Monday, December 15th, and the team immediately began focusing on maximizing his respiratory support and oxygenation.  For most of his stay in the PICU, Caleb was paralyzed, heavily sedated and was receiving inhaled nitric oxide and Epoprostenol (Flolan) to help relax his blood vessels and increase the supply of blood to his lungs, in hopes that it would reduce the workload of his heart.  Thankfully, Caleb responded well to the medication and treatment and did not need the extracorporeal membrane oxygenation (ECMO) machine.  Caleb was moved back to the NICU last week and it has been nice being around familiar faces and a relief that he is being cared for by doctors, nurses, and respiratory therapists that know him very well.

The follow-up echocardiogram was improved and remains stable and they will continue to monitor his heart function and pulmonary hypertension.  Caleb also had an eye exam to see how his eyes responded to the laser surgery (also called photocoagulation) to correct his retinopathy of prematurity (ROP).  As of now, we are happy to report that the surgery was successful and he is not due for another eye exam for three months.   

Caleb’s recovery has been slow, but he has been stable and resting comfortably for the most part.  He is no longer being paralyzed and has had some good moments of being awake and alert.  Unfortunately, his list of sedation and pain medication seems to grow with each infection, which leads to a lot of weaning and withdrawal.  At times, he is extremely irritable, restless and difficult to console.  These symptoms, along with a temperature on and off, make it hard to determine if he is withdrawing or getting sick again.  Although I hope he is only withdrawing, it is not easy to watch as we have been in this position so many times before.  It’s a constant uphill battle and frustrating because as soon as we feel like we are making progress and getting close to being off the narcotics, his status changes and it’s as if we start all over again.  So, in the meantime, we will take it minute by minute with Caleb…cherish the good days and hope the bad days are few and far between.  We can only hope that the weaning process gets easier for Caleb and that he can get healthy and stay healthy.  His lungs just need time to recover and get stronger…

Wishing you all a Happy & Healthy New Year.

Keep fighting, Caleb.

When we first learned of Caleb's diagnosis at our eighteen week sonogram, we tried to prepare ourselves for a long and difficult journey. Looking back, I am not sure it is possible to fully prepare yourself for a sick baby. With a fifty percent chance of survival, we are thankful for an incredible five months. It has been a roller coaster ride full of ups and downs, good days and bad days, and a lot of trying times. In addition to celebrating Caleb being five months old, we are forced to watch him suffer and fight through yet another obstacle. For the first time in over a month, we were able to truly enjoy our little boy last week. We held him for countless hours, captured him being held by his big brother, Brody, for the first time, helped and participated in his occupational therapy, and just cherished him being awake, alert, and smiling. Although the amazing moments didn't last nearly long enough, we are grateful as its remembering those times that are giving us the strength to get through this very challenging week.  

We arrived Sunday to see a rash that had been brewing overnight.  There was no immediate concern as he was acting normal and was not showing any signs of discomfort.  It wasn't until that night that Caleb's status began to deteriorate.  During my routine call to the overnight nurse, I learned that he was once again requiring 100% oxygen.  This was similar to Thanksgiving when he contracted a rhinovirus, however, this time Caleb was not responding to the increase in oxygen.  A blood and tracheostomy culture were sent and his labs were elevated indicating that he was fighting some type of virus/infection.  In order to treat his sudden respiratory distress, they began giving him inhaled nitric oxide to help relax his pulmonary blood vessels and improve oxygenation.  They utilized a proBNP test to detect, diagnose, and evaluate the severity of the stress and damage to Caleb's heart and the results were much higher than normal.  An echocardiogram that morning confirmed that his pulmonary hypertension had worsened and his heart was working too hard.  Pulmonary hypertension is high blood pressure that occurs in the main artery that carries blood from the right side of the heart (the ventricle) to the lungs.  When the smaller blood vessels in the lungs become more resistant to blood flow, the right ventricle must work harder to pump enough blood through the lungs.  It was then that the decision was made to move Caleb from the NICU to the Pediatric Intensive Care Unit (PICU) where they were capable of administering certain medications and placing him on the extracorporeal membrane oxygenation (ECMO) machine, if necessary.  ECMO is a temporary bypass technique used to provide both cardiac and respiratory support to patients whose heart and lungs are so severely diseased or damaged that they can no longer serve their function.  We could have never imagined that after such a great week, we were now faced with the possibility of ECMO.

Leaving the NICU was devastating news to me.  Not only has it been my second home for the last five months, but I have met and created friendships with some amazing doctors, nurses, and respiratory therapists.  They welcomed my family into the NICU, made us comfortable day in and day out, made us laugh at even the darkest of times, and most importantly, treated and cared for Caleb as if he was their own.  Their compassion and kindness toward our family and their support has gotten us through these difficult and trying times, and for that, we will be forever thankful.  It is unclear at the moment if Caleb will ever return to the NICU, but we trust their decision and know that he is ultimately in the best place possible.

Caleb arrived in the PICU on Monday, December 15th, and the team has focused on maximizing his respiratory support and oxygenation.  Since the inhaled nitric oxide was not working well enough, they started Epoprostenol (Flolan) to relax his blood vessels and increase the supply of blood to his lungs, in hopes that it would reduce the workload of his heart.  Although Caleb has been paralyzed and heavily sedated, he has been stable for the most part and continues to rest and recover.  He is no longer requiring as much oxygen and his repeat proBNP and echocardiograms are very much improved.  They believe that the rash was caused by an allergic reaction to the antibiotic, Oxacillin, which he had been receiving for three weeks to fight his most recent bacteria blood and tracheostomy infection.  The onset of the reaction to Oxacillin began when it was stopped Saturday afternoon.  To date, all of Caleb's labs with regards to his blood and virus swabs have been negative.  Therefore, we may never truly know if Caleb's sudden respiratory failure was due to the allergic reaction, in addition to some other underlying virus/pneumonia.  Once they believe Caleb has fully recovered and his lungs are in a better place, they will begin weaning him slowly from all of the new medications and treatments that he started receiving this week.

Happy five months to our baby boy!  Hoping he continues to fight and that there are better days ahead...

Shortly after finishing my last blog, Tim and I arrived at the hospital to spend some time with Caleb before heading to Thanksgiving dinner with our family.  During my routine call that morning to the overnight nurse, I was told that Caleb had a good night and he remained comfortable.  So, our hearts dropped when we entered his room that morning and saw that he was requiring almost 100% oxygen.  Caleb typically requires between 35-50% oxygen so we immediately knew something was wrong, but unfortunately there were no answers.  The remainder of that day and night proved to be challenging for Caleb as he was receiving the maximum amount of oxygen he could, his ventilation support was increased, and he was still working extremely hard to breathe.  As you can imagine, it was an incredibly long night.  As much as I tried to stay positive, it was beginning to get difficult as the bad days started to become much more frequent.  Caleb seemed to struggle ever since his 2nd CDH repair on October 15th.  They were unable to extubate in fear that he would reherniate again and the decision was made to move forward with the tracheostomy.  Although we knew the tracheostomy would not solve Caleb’s underlying issues, we were hopeful that a more secure airway would allow him to progress and be a baby again. The tracheostomy surgery, however, took everything out of him and his immune system began to shut down as he developed a tracheostomy infection and bacterial blood infection.  His decline in status was at its worst Thanksgiving night.

Over the last several weeks, we had had many conversations with the NICU team regarding Caleb’s condition and it became clear that “complicated” Caleb had returned.  It was becoming more and more difficult to remember the good days and I constantly worried about whether or not he was strong enough to overcome the latest onset of issues.  It was hard to not start second guessing the decisions we had made…

Thankfully, the day after Thanksgiving was a better day for Caleb.  They were slowly able to wean his oxygen and his work of breathing had settled.  That night brought about the answers we were searching for the day before.  On top of his other two infections, Caleb had somehow contracted a rhinovirus (RV), which is the most common viral infective agents in humans and is predominantly the cause of the common cold.  Although the rhinovirus infection is not as substantial a problem as RSV and influenza, it can have serious consequences on children like Caleb with chronic lung disease.  The treatment of this virus for Caleb focused on symptomatic relief and prevention of person-to-person spread and complications.  In order to ensure that the virus was not spread among the other NICU babies, Caleb’s room went under contact precautions for a week and a mask, gown, and gloves had to be worn at all times before entering. 

Last week, their main priority was getting Caleb healthy again.  As the week progressed and he started feeling better, it became apparent that he was a bit too sedated.  They began weaning his sedation and pain medication as fast as he would tolerate, but not too fast as he had shown signs of withdrawal from Methadone in the past.  Once again, his blood gases, which help determine his adequacy of respiratory function (oxygenation and ventilation) as well as his acid/base balance, were less than desirable.  When the blood gases were drawn, he was always in an optimal position, seemed to be very comfortable and clinically, he looked great on the monitor.  So, needless to say, the results were extremely frustrating. 

On my way home from the hospital one night, reality set in and I realized just how easy it was to get caught up in the NICU life.  I was focusing on his blood gases, doses of medication, and numbers on the monitor rather than just enjoying my time with him and being thankful that he was in a much better place than the week before. 

I hesitate in writing this next piece as I know all too well how quickly things can change.  Finally, the baby boy I have longed for and missed so much has returned this week.  Caleb is one hundred forty-six days old and weighs about 11 pounds 14 ounces (chunky monkey to say the least).  His blood gases have improved so his vent settings, along with his pain and sedation medications, have been weaned quite a bit, but at a slow and steady pace.  Caleb has been very happy, alert and content and is now receiving physical and occupational therapy 3-4 times a week to help promote his growth and sensory development for hearing and vision.  He loves watching his mobile, being in his swing, taking baths and of course being held (or maybe we love holding him). 

Brody came to visit Caleb this past Wednesday and it was priceless.  Brody adores his baby brother and words cannot express how amazing it was to see the smile on his face when he got to hold him for the first time.  Seeing the two of them together gives me chills and melts my heart…I look forward to the day when having both of my boys together becomes the new normal.

We are so incredibly thankful for how far Caleb has come and for the good days that we so often take for granted. This is long overdue and my only hope is that Caleb stays HEALTHY and that he continues to tolerate all of his weans. 

Grow, get stronger, and keep fighting, Caleb!!!  

On November 19, 2014, Caleb turned four months old.  It has been the most rewarding yet challenging and difficult months of my life.  This year, words cannot truly express how thankful we are for our very healthy and active kindergartener and our miracle boy.  Caleb continues to amaze us with his fight and determination to overcome all of the obstacles that are thrown his way.  In just his little time, he has undergone five surgeries, fought numerous infections, and beaten the odds when nobody thought possible. 

Caleb received his tracheostomy on November 14th and his recovery has been all but easy.  The surgery itself lasted a little over an hour and went smoothly.  Unfortunately, it took a few hours after surgery to determine the amount of sedation and pain medication needed to make Caleb comfortable, but they eventually found his happy place.  His arms were immediately restrained and would remain that way for over a week to ensure that the stoma and tracheostomy site were able to heal properly.  Over the course of this past week, Caleb’s blood gases, which help determine his adequacy of respiratory function (oxygenation and ventilation) as well as his acid/base balance, were falling outside the normal range.  He was in need of more respiratory support, but the hope was that once the first tracheostomy change occurred, his gases would improve and stabilize. 

Saturday proved to be one of the toughest days yet as Caleb’s status deteriorated.  The first tracheostomy change was performed the prior day, but his blood gases remained consistently abnormal and this was a major concern.  Not only were they having difficulties providing the proper ventilation support, but he began having bradycardia episodes, where his heart rate would drop and become slower-than-normal and simultaneously cause a low level of oxygen in his blood (desaturation).  At times, it got so bad that they would need to bag him by gently pushing oxygen into his lungs.  As these episodes became more frequent throughout the day, they decided it would be best to paralyze him and give him time to recover.  Overnight, we learned that along with a tracheostomy tube infection that was discovered earlier in the week, Caleb was also fighting another severe infection that had spread via his bloodstream (sepsis).  This helped explain his unusual behavior, but not without a very emotional day and what feels like years off of my life.   

On a better note, Caleb had received several doses of antibiotics by Sunday and it was indicative in his behavior as he was starting to act like my baby boy again.  Since then, they have weaned his morphine, removed the paralytic, and thankfully, his blood gases have started to improve.  In the days and weeks ahead, they will continue to wean his morphine and sedation medication slowly and will adjust his vent settings as needed until his blood gases stabilize.  It is a huge relief to also mention that Caleb’s five week follow up appointment with the eye doctor showed that his eyes were doing great and that his surgery for Retinopathy of Prematurity had been successful.      

Now that Caleb has a more secure airway, he is back in a crib and enjoying his new mobile with fun movements and soothing music.  This along with his physical and occupational therapy will promote his sensory development for hearing and vision and will help with his growth and development.  He is starting to smile and best of all, we are able to hold and snuggle him for endless hours. 

Slow and steady wins the race…

Happy Thanksgiving to all and 1st Turkey Day to Caleb!!!

Today, we prepare ourselves for Caleb's 5th surgery.  Caleb will be one hundred and eighteen days old tomorrow and will undergo a surgical procedure for a tracheostomy. An incision will be made in his neck into the trachea (windpipe) and the resulting stoma (hole), or tracheostomy, will be used as the site for his tracheostomy tube to be inserted.  The tube will allow him to breathe without the use of his nose or mouth.

Last week was one of Caleb's best since his eye surgery and CDH repair. He was back to full feeds and his blood gases, which help determine his adequacy of respiratory function (oxygenation and ventilation) as well as his acid/base balance were finally within normal range.  We were also able to hold him again after three weeks and it was a great feeling.  On the flip side, this week was a bit harder for Caleb.  After being on pain medication (i.e. Methadone, Morphine, Ativan) for his entire life, the NICU team has been slowly weaning Caleb off all pain medicine.  On Saturday, November 8th, Caleb received his last dose of methadone and within a few days was showing signs of withdrawal.  That along with his agitation from the feeding tube in his mouth made him extremely irritable.  He was restless, had trouble sleeping, sucked on his pacifier excessively, would get very clammy at times, and he made crazy movements with his hands and feet that were sometimes uncontrollable.  This was very difficult to watch as we were told that withdrawal could last weeks. They decided to start giving morphine around the clock since the decision was made on Tuesday to proceed with his tracheostomy surgery and he would eventually need to be weaned off pain medication again in the near future.  In the meantime, this helped Caleb settle out and he's been much more comfortable the past few days.

Two times this week, Caleb wanted to keep things interesting in the NICU and self extubated himself, meaning he somehow removed his endotracheal tube. Although this can sometimes lead to serious complications, Caleb did well both times and was thankfully reintubated with no issues.  Caleb was extubated prior to his CDH recurrence and there were discussions about letting him try again. However, since he has a partial rehernia at the moment, the concern is whether or not the pressure from the nasal canal or continued positive airway pressure (CPAP) would worsen the hernia and lead to another surgery.  This was not a risk that the NICU team and general pediatric surgeons were willing to take.  So the decision for a tracheostomy seemed clear...

We have since gotten over the initial shock of this procedure and have been preparing ourselves for this possibility.  The hope is that it is temporary and that it will give him the time he needs to grow and allow his lungs to get bigger and stronger.  As much as we are prepared, we are also scared.  After receiving his tracheostomy, he will be sedated (almost paralyzed) and will once again receive various medications to control his pain.  In addition, his arms and legs will be restrained for 1-2 weeks allowing the stoma and tracheostomy site to heal properly.  The surgeon will then perform the first tracheostomy tube change at which time Caleb can begin to be a baby again!  The tracheostomy will be much more comfortable for him and will provide a more stable and secure airway in which he will no longer require as much pain medication and sedation.  We are looking forward to seeing his adorable face and hopefully a smile soon.  Also, we will be able to hold and interact with him regularly and he can begin to develop with the help of occupational and physical therapists. Unfortunately, this also means that Caleb will require extra care and supervision when he is finally able to come home.  The unknown is hard, but like everything else, this too will work itself out...  

Good luck to our little warrior tomorrow.  Keep fighting, Caleb!

I honestly don't even know where to begin. The last two weeks have been filled with good days, bad days and everything in between. The last I wrote, Caleb was recovering from eye surgery and his 2nd CDH repair.

Thankfully, Caleb's follow up appointments with the eye doctor showed that his eyes responded perfectly to the surgery and he should no longer be in danger of further retina eye disease. The goal of the surgery for retinopathy of prematurity is to stop the progression of the disease and it appears it has at the moment; however, a degree of Caleb's peripheral vision may be lost. He will have follow up exams every few weeks while at the hospital and then he will need regular, yearly eye exams for most of his life. This was such a relief and some much needed good news...

When Caleb came back from his CDH repair surgery, the pediatric surgeons expressed their concern over whether or not the two additional patches would hold since there was not much viable tissue in the surrounding areas. Our biggest fear came true just thirteen days later when we learned that Caleb had reherniated again. Although this is typical after an initial CDH repair, it usually does not occur until months or even years later. The panic set in and my mind started racing. The next few days were a blur as we tried to process everything. We met with the surgeon and he addressed what felt like a million of our questions. Unlike the last recurrence, they do not believe that emergency surgery is required since only a small portion of his stomach is up in his chest and it should not be causing Caleb any distress. In addition, they do not believe he has fully recovered from the last repair and they want to make sure he is strong enough to withstand another surgery, if and when that decision is made. We discussed the latissimus dorsi muscle flap repair, which is another approach besides the patch, but Caleb is just not big enough yet. After discussing our options it was determined that the plan of action would be to monitor the reherniation closely and most importantly get him bigger and stronger. His lungs are very immature and there is a lot of scar tissue so his respiratory function will be their primary focus.

This week, the NICU doctors will be consulting with the pulmonary team, who deals with diseases involving the respiratory tract and manages patients who have needed prolonged mechanical ventilation. Although Caleb went several weeks with no mechanical ventilation, he still needed the help of continuous positive airway pressure (CPAP) and the nasal cannula. They had been unable to wean this support and his tachypnea (rapid breathing) was still present and at its worst. As a result, they have mentioned the possibility of Caleb needing a tracheostomy, which is an opening into the windpipe (trachea) that is held open by a tracheostomy tube and helps you breathe when the usual route for breathing is impaired. After the initial shock, we have started to prepare ourselves for this procedure and focus on some of the benefits. Caleb will be able to breathe easier as it offers a more stable and secure airway, he will not require as much pain medication and sedation, and he can begin developing at a normal pace. As parents, we will be able to see his adorable face (entirely), enjoy his coo’s as only a baby can do, see him smile, and we will be able to hold and interact with him again. If this is determined to be the direction in which the doctor’s proceed, the hope is that tracheostomy would be temporary and can be removed once Caleb’s lungs grow and develop over time.

With both surgeries just a day apart, Caleb's already immature lungs took a big hit and he still hasn't recovered. Although they tried to extubate a few days after his CDH repair surgery, he proved that he wasn't ready. He remains intubated and has needed more respiratory support over the last week then he has in a long time. In the midst of trying to recover from the surgeries, he has developed two endotracheal tube (ET) infections and a blood infection, which means more setbacks and antibiotics.

On a better note, Caleb’s first Halloween was one to remember. He was the cutest bat, monster, pumpkin, pea pod, and skeleton and being dressed in the crazy outfits didn’t seem to bother him at all. A special thanks to the nurses and RTs who helped make it so memorable!!!

The goal is to keep him comfortable and get him healthy (no more infections) in the days to come and to improve his respiratory status. Hoping he continues to tolerate the steady increase back to full feeds, slow wean of his methadone, and most importantly that his reherniation remains stable and unchanged.

We are beyond grateful for the continued support of our family, friends, and even those we do not know. Your thoughts, prayers, messages, and texts are what get Caleb and us through this extremely difficult time.

Stay strong and keep fighting, Caleb! 

Shortly after finishing my last blog about the good days, the bad days started to resurface quickly.

Once Caleb was stable enough after birth, they began routine eye exams every two weeks to screen for a condition called Retinopathy of Prematurity (ROP). ROP is a disease that occurs in premature babies where abnormal blood vessels grow in the retina, which is the layer of nerve tissue in the eye that enables us to see.  This growth can cause the retina to detach from the back of the eye, leading to blindness.  About 1,100–1,500 infants annually develop ROP that is severe enough to require medical treatment and about 400–600 infants each year in the United States become legally blind from ROP.  Following his exam on Monday, October 13th, I received a message from his doctor at the Wilmer Eye Institute and my heart dropped, as I knew that it could only mean bad news.  ROP is classified in five stages, ranging from mild (stage I) to severe (stage V) and we learned that Caleb had developed stage II "plus disease" meaning that his blood vessels of the retina had become enlarged and twisted, indicating a worsening of the disease.  Laser surgery (also called photocoagulation) was performed on Tuesday to help destroy the peripheral areas of the retina in hopes that it would slow or reverse the abnormal growth of the blood vessels.  Since the surgery focuses treatment on the peripheral retina, these areas will be scarred and some amount of Caleb's peripheral vision may be lost.  However, the goal is to preserve the central retina to allow him to be able to perform vital functions like seeing straight ahead, distinguishing colors, reading, etc.  Although ROP surgery has a good success rate, not all babies respond to treatment.  Caleb will be followed closely to see if his eyes are responding to the laser treatment, but we will not know the results and whether or not the progression of the disease was stopped until around October 28th.  If the ROP continues to worsen, Caleb may need additional laser and/or other eye surgeries.  Of all things that could happen, the potential for blindness is one of the scariest to me as a parent.  The waiting period continues to be extremely difficult and I can only hope that Caleb is lucky enough to see the world and all of the things that we take for granted on a daily basis.

Caleb's next obstacle and fourth surgery came on Wednesday, October 15th at just eighty-eight days old.  The doctor's plan for the day was to just monitor Caleb's pain and keep him comfortable since eye surgeries are very tough on babies.  That afternoon, a random chest x-ray was ordered to check the placement of Caleb's feeding tube.  It was discovered then that he had re-herniated and a portion of his bowel was once again up in his chest. Although we knew this was a possibility, nobody expected it to happen so soon after his initial CDH repair.  Caleb underwent emergency surgery that night.  It is believed that this subsequent surgery to repair the recurrence of his CDH was needed due to the severity of Caleb's CDH, his age at repair (twenty-four days old/31 weeks gestational age), and the fact that a GORE-TEX® patch was used during the initial surgery.  Often times, the patch pulls away from the chest wall, as the child grows, causing a recurrence.  It turns out that his diaphragm needed to be re-patched in two places and unfortunately, the general pediatric surgeons are not confident that the patch will hold due to the difficulty they had in utilizing the available tissue to make the repair.  The condition of the patch will be closely monitored by doctors to ensure that it remains intact.    

Caleb is three months old today and has now undergone more surgeries than some people have in a lifetime.  After seeing him do so well the past few weeks, I feel as if we are starting over.  He was re-intubated for surgery and will remain on the conventional ventilator until his respiratory support can be weaned, his feeds have been stopped, and his pain is being controlled with both methadone and morphine.  I miss my very alert little boy terribly and am longing for the moment when I can snuggle with him again.  

Through all of this, Caleb's strength is admirable.  We will continue to focus on his amazing progress thus far and stay positive as he recovers from the events that took place this week.  I can only wish that things begin to get easier for him...

We ask for your thoughts and prayers as we await the results of Caleb's eye surgery.

Caleb continues to make progress and the good days have started to outnumber the bad days.  As much as I want to stay positive and be thankful for the good days, I also constantly worry as we have seen too often how fast his status can change.
 
Over the last two weeks, the doctors have focused on Caleb’s respiratory status, his feeds, and his daily pain medication.  In order to maximize Caleb’s respiratory function, they have been alternating his support between the continuous positive airway pressure (CPAP) and nasal cannula in hopes that in time, his lungs will get bigger and stronger.  He was transitioned from trophic feeds, which is administering the total nutritional volume in equal hourly increments to compressed feeds, which is dividing the total nutritional volume for twenty-four hours into equal portions.  In Caleb’s case, he went from receiving 17 cc per hour to receiving the same volume (68 cc) infused over three hours with an hour off in between (approximately 13.79 ounces per day).  His feeds will be compressed slowly until he tolerates the same volume over a smaller period of time (1/2 hour to hour), creating about six equal feeds.  In addition to compressing his feeds, they began fortifying his milk to provide him with more calories and additional nutrients required to promote his growth and development.  Caleb is now weighing in at just under six pounds.  Unfortunately, before oral feeds can begin with a bottle, Caleb’s tachypnea (condition of rapid breathing) must settle since they are typically withheld when the respiratory rate exceeds 80 breaths per minute and his often exceeds 100 breaths per minute.  Caleb has been receiving methadone, which is a longer lasting pain medication, since shortly after birth.  They have begun weaning his methadone doses by 10-20% every three days, depending on his clinical response and whether or not he is showing signs of withdrawal.   Some of his scheduled weans have been delayed due to potential withdrawal, but he is making progress and has gone from receiving .37mg to .14mg every six hours.  Caleb is also being seen regularly by both an occupational and physical therapist to help loosen and strengthen his muscles.  He was recently fitted for hand splints that he wears for four-hour periods to encourage him to keep his hands in an open position rather than fisted.  Finally, no additional unusual behavior has been suspected since the seizure scare that I mentioned at the end of my last blog on September 27th.

It was a big week for Caleb!  We gave him his first real bath and he loved it, he met his awesome and very excited big brother, and his grandmothers held him for the first time. 

Introducing Brody to his baby brother was highly anticipated, but Caleb’s changing status made it difficult to know when the right time would come.  Until flu season, siblings are able to visit during certain hours on Sunday and Wednesday only.  So, after eighty-one days, Caleb and Brody finally met and it was by far the greatest moment yet.  The smile on Brody’s face was contagious, his excitement was priceless, and Caleb was wide-awake and very alert making it easy to capture pictures of their first time together.  Brody continues to love kindergarten and has adjusted well these past few months.  Our time at home with him is limited and sadly, we sometimes don’t even make it home in time to say goodnight, which is extremely hard on Tim and I.  As for Brody, we are so proud of his resilience during this difficult time and it is apparent that Caleb gets his strength from his big brother.

Under the circumstances and the fact that Caleb arrived almost three months early, we had not picked out a theme or even thought about how we were going to decorate his nursery.  We decided it was finally time so I ordered the stuff and Tim spent countless hours painting and putting together all of the furniture (getting the harder end of the deal) and it turned out perfect.  The same friend that made Caleb's ribbons also gave us wall decals with planes and clouds (clouds represent CDH awareness).  They were just what we needed to put the finishing touches on his nursery.  Now that Caleb’s nursery is complete, we are anxiously awaiting the day we can finally bring him home. 

This past Thursday, October 9th was Caleb’s actual due date.  We have noticed and have been told that the end of Caleb’s stay in the NICU will be the most difficult for us as parents.  His progress is amazing and his fight is incredible but the road ahead is long.  Time seems to be standing still as Caleb battles his toughest obstacle yet, which entails not only maintaining but also improving his respiratory function.  The hope is that time is all he needs for his lungs to mature and grow, but the constant worry remains as they struggle to wean his respiratory support.  Caleb’s rapid breathing proves that he is still working too hard.  For CDH babies, oral feeds can also be a challenge due to reflux, oral aversion, and the inability to suck, swallow, and breathe at the same time.  Caleb will continue to receive his compressed feeds, but his respiratory function will remain their primary focus. 

My days are long and tiring, but seeing him alert, giving him baths, and our hours of snuggle time each night are what keeps me going!

Caleb’s plan…keep fighting, get strong and stay healthy!!!

At the beginning of last week, Caleb was still under the weather and trying to recover from his bacteria blood infection.  Wednesday proved to be a big day for him as the antibiotic started to kick in and he was becoming the alert little boy I remembered.  He was doing well with regards to his respiratory function and the doctors decided they wanted to re-extubate as he was showing signs that he was ready.  I was not expecting him to be re-extubated so quickly and the anxiety set in immediately.  When Caleb was extubated the first time, there was a major concern over the frequency of his bradycardia (slower-than-normal heart rate) episodes.  However, the episodes greatly diminished when he was re-intubated and breathing with the help of the conventional ventilator.  Of all things, this gave me nightmares as I feared what it meant if the bradycardia episodes started to occur again, after he was re-extubated the second time…

After what seemed like an incredibly long day at work, I arrived at the hospital to find Caleb breathing with the help of a CPAP, or continuous positive airway pressure.  Even better, the nurse told me that Caleb had only had a few bradycardia episodes since his transition from the conventional ventilator to CPAP, which had been several hours at that point.  I couldn’t help but smile and feel a sense of relief.  The rest of Wednesday and Thursday were focused on maintaining his respiratory support and slowly increasing his feeds to where he had been before the blood infection.

Caleb turned two months old on Friday, September 19th, and to our surprise, the nursing staff moved him to a room with a window.  This was greatly appreciated as we would now be able to introduce Caleb to the sunlight!!!  Unfortunately, along with his new room came yet another setback.  Caleb began spitting up and appeared very uncomfortable.  The doctor’s started to eliminate causes such as his feeds and the potential that he was showing signs of withdrawal due to how he was receiving his doses of Methodone (pain reliever), which had been switched from IV to orally through his feeding tube.  In addition, they performed an abdominal x-ray and ultrasound that did not provide any answers as to why he was suddenly getting sick.  This went on for over twenty-four hours and after removing some of the fluid from his stomach, by way of his feeding tube, there was a sudden change in his behavior and he was no longer “unhappy”.  They believe his upset stomach was the result of gastritis, which is the inflammation of the lining of the stomach, and was most likely caused by the infection and other medication and steroids he has been receiving multiple times a day.

His demeanor all around had gotten so much better since Saturday and he only fussed when provoked…haha!  At times, he even enjoyed hanging out in his bouncer and best of all, I was enjoying my snuggle time with him.  It’s a different kind of hard being at work these days, as before we worried about his changing status and now I want to be there to hold him and interact with him, which has just recently become the new normal.  He is back to full feeds (16 cc/hour or approximately 13 ounces/day) and seems to be tolerating them well.  Also, his respiratory status has been perfect and they were even able to switch him from the very uncomfortable CPAP to the nasal cannula. 

My goal was to finish this blog by telling you that Caleb has been great since Saturday, but he must have had a different plan.  Thursday, I received yet another phone call from a doctor at Hopkins stating that Caleb’s status had changed.  Some of the nursing staff had noticed some irregular activity and movements from Caleb, which appeared similar to that of a seizure.  A neurologist was consulted and a head ultrasound was performed, which had remained stable when compared to the one last week.  In addition, he was monitored via an electroencephalogram (EEG) for twenty-four hours to measure and record the electrical activity of his brain and to confirm whether or not he was having seizures.  Late last night, we got the good news that the neurologists do not believe there was any seizure activity and some of the confusion came due to the movements of his body and bobbing of his head when he breathes!  Thankfully, he does not need any standing medication to treat seizures at this point and the NICU staff will continue to look for and report any additional unusual behavior.  Hopefully, that was the last seizure scare…

Our poor boy just needs a break.  Keep fighting, Caleb!!!

Once again, I am sorry for my delay in updating the blog.  I am still trying to process everything that has happened over the last week...

Last Friday, September 5th, Caleb was extubated and his endotracheal tube (ETT) was removed at forty-eight days old. When hearing the news that morning of the doctor’s plan to extubate, I was beyond excited since this would be the first time since birth that Caleb would no longer require mechanical ventilation to maintain sufficient ventilation and oxygenation.  I arrived at the hospital that afternoon and Caleb was breathing with the help of a CPAP, or continuous positive airway pressure.  This type of respiratory support was delivering constant air pressure into Caleb’s nose, which was helping to keep the air sacs in his lungs open.  In the days following Caleb's extubation, he was switched between a CPAP and nasal cannula, which is one of the least invasive forms of respiratory support.

The transition off the conventional ventilator was proving to be successful as frequent blood gases, which were used to help determine Caleb's adequacy of respiratory function (oxygenation and ventilation) as well as his acid/base balance were perfect and within normal range.  Some of the best and most priceless moments to date came that weekend!!  For the first time, I was able to hold Caleb and stare at his adorable little face with no breathing tube.  I watched him breathe on his own, listened to his muffled cry, and helped soothe him with a pacifier.  It was then that I truly realized just how far Caleb had come.

Unfortunately, this incredible step forward for Caleb came with a few setbacks and a lot of confusion.  "Complicated Caleb" had returned... 

His blood gases, while extubated, continued to prove that he was doing great with regards to his respiratory function.  However, he began having bradycardia episodes, where his heart rate would drop and become slower-than-normal and simultaneously cause a low level of oxygen in his blood (desaturation).  With the majority of these episodes, Caleb would begin breathing well before the nurse would have time to respond.  Other times, he would need to be stimulated, through rubbing or patting, until he recovered.  The confusion amongst the team of doctors set in as the bradycardia episodes ranged from hours with none to periods where they would occur every few minutes.  Sometimes totaling over one hundred episodes a day.  Over the next several days, the doctors began trying to rule out every possible cause.  An echocardiogram and electrocardiogram (EKG) were performed to check Caleb's heart function and the electrical activity of his heart.  An electroencephalogram (EEG) was performed to measure and record the electrical activity of his brain and to confirm that he was not having seizures.  A repeat head ultrasound showed reduced ventricle size and validated that the shunt was working properly. Finally, his feeds that had been increased to 12cc per hour continuously were stopped to see if reflux, which is prevalent in CDH babies, was playing a part in the episodes.  A pediatric cardiologist was consulted due to some concern over his EKG and a possible heart block, but after analyzing the rhythm of his heartbeat further they dismissed this as they believed there was another underlying issue.  As much as we longed for an explanation, we were relieved when all of the results came back normal.  The days went on and the bradycardia episodes continued...

What came next still gives me chills thinking about it.  I made my routine phone call Thursday morning around 6:30 AM to see how Caleb did overnight.  Rather than the nurse I expected, a doctor picked up and began explaining that Caleb's status had taken a turn for the worst.  His heart rate had dropped once again, but this time, he did not respond to stimulation and he coded.  They tried to resuscitate him by "bagging", but with no success they started administering chest compressions.  Thankfully, after some persistence, they were able to re-intubate and he was breathing again with the help of a ventilator.  

Caleb hasn't been himself since that morning and it was determined that his immune system had shut down due to sepsis (blood infection).  Sepsis is a condition in which the body is fighting a severe infection that has spread via the bloodstream.  While waiting for the final blood culture results, which take forty-eight hours, he had been receiving several different antibiotics since Thursday.  Now that the specific bacteria has been identified, Caleb is now receiving the antibiotic that will hopefully kill the organism responsible for his infection SOON.  Oddly enough, since Caleb has been re-intubated, his bradycardia episodes are happening much less frequently.  And, as much as I would like to say the infection was also causing the severe bradycardia episodes earlier in the week, I am honestly not convinced that is the case.   I hope I am wrong, but I can't help but think that something is being missed.  

I am puzzled with all of the events that took place this week and full of emotions as the roller coaster ride continues.  I feel helpless and I just want my very alert and happy baby boy back that I held a week ago...

Keep fighting, Caleb!!!

Sorry for the delay in writing!  I am still trying to adjust to my new schedule and have been pretty exhausted.  My first week back to work went well, but as you can imagine, the days never seem to go fast enough.  I find myself counting down the minutes until my work day ends and my real day finally begins, which includes seeing Caleb at the hospital and making it home most nights to spend some time with Brody before putting him to bed.  

My first day back to work, Tuesday, August 26th, was Caleb's worst day since his CDH surgery.  Caleb's stability started to decline, which was characterized by an increase in blood pressure and random episodes of a slower-than-normal heart rate (bradycardia) and a low level of oxygen in his blood (desaturation). The concern mounted and they began trying to determine the cause of Caleb's sudden change in status.  He appeared as if he was getting sick so they began trying to rule out some type of infection and they ordered a Magnetic Resonance Imaging (MRI) of his brain to determine if the hydrocephalus was causing extreme pressure on the tissues of his brain.  The results of the MRI showed that the pressure and build up of fluid due to the hydrocephalus was increasing much faster than anyone had anticipated.  This most likely was causing his decline in status, but an infection had to be ruled out completely before they could proceed with his shunt surgery.  In order to test Caleb's cerebrospinal fluid (CSF), the fluid that surrounds his brain and spinal cord, for infection, a lumbar puncture (spinal tap) was performed.  During the procedure, they were also able to drain some of the fluid, which they hoped would release some of the pressure and buy some time until his shunt surgery could be scheduled.

In the days following the spinal tap, his status improved and the results of the tests for infection (urinary track infection, blood, CSF, etc.) came back negative, which was a huge relief.  Caleb's settings on the vent are still being weaned slowly and the doctors are hopeful that they can try to remove his endotracheal tube (ETT) soon.  I am highly anticipating the moment that he no longer requires mechanical ventilation to maintain sufficient ventilation and oxygenation as we will be able to hold Caleb again and we will finally be able to hear him cry (which I will probably regret saying at some point...haha). Unfortunately, there is no perfect time to extubate so it is important that this is not performed too soon since re-intubating can be a stressful process for babies. However, any time off the vent is better than time on the vent so we hope Caleb proves he is ready soon!  In addition to his vent settings being weaned, his trophic feeds have been increased to 6cc per hour continuously, equaling approximately 4.87 ounces a day.

My best moment came this past week when the nurse surprised me and I was able to hold Caleb for the second time at forty days old.  I held him for a little over an hour and I could not have been happier since it was under much better circumstances than the first time we held him.  I am already looking forward to the next time...

On Wednesday, September 3rd, at forty-six days old, Caleb underwent his second surgery.  A ventricular peritoneal (VP) shunt was successfully implanted on the right side of his head just behind his ear.  A narrow piece of tubing was placed within the fluid-filled ventricle inside his brain and it was then passed under the skin into his abdominal cavity.  The hope is that the shunt relieves the pressure on his brain, caused by the hydrocephalus, by draining the extra fluid in his brain ventricles to his abdomen where it can be absorbed more quickly.  The follow-up head ultrasound today showed that the size of the ventricles remained stable (if not slightly better) and there was a mild decrease in the brain bleed, which were both very comforting to hear.  He will be monitored closely as complications such as mechanical failure, infections and obstructions can occur in the future, which may require a subsequent surgery. Although the placement of the shunt during surgery was a success, Caleb's long term cognitive and physical development is still unknown.  As each developmental milestone approaches, we will begin to see if he possesses the functional skills (gross, fine, language, cognitive, and social) and is performing the age-specific tasks that is expected, but every child is unique (especially Caleb).  So, only time will tell...

Once again, our little miracle man continues to surprise us everyday with his fight and determination to overcome each obstacle that stands in his way. Caleb's progress thus far is amazing and hopefully (with two surgeries behind him), he is now truly on his way to recovery.

As I sit here in Caleb's NICU room, I am trying to prepare myself for what will be an extremely difficult week.  Today, I watched my five-year-old get on the school bus for his 1st day of kindergarten.  Although Brody has attended daycare/pre-school since birth, he would much rather be getting dirty while playing outside than sitting at the table and doing anything that resembles school work.  I am a little nervous and sad to see my little boy growing up so fast, but he is so smart and I know he will do great.  I welcome this next chapter of his life, but I wish it was coming at a better time.  

As if balancing being home with Brody and being at the hospital with Caleb hasn't been hard enough, I have decided to go back to work on Tuesday. Spending my days (and some evenings) at the hospital has become my new routine and I am lucky to have had this time with Caleb, but I had hoped he would be in a better spot when I returned to work.  He is thirty-seven days old and almost two weeks post CDH surgery, and he has made tremendous progress with regards to his ventilation.  He was transitioned from the oscillator vent to the conventional vent this past Saturday and he continues to be weaned slowly. At the end of the weaning process, Caleb will no longer require mechanical ventilation to maintain sufficient ventilation and oxygenation and he will be extubated, which refers to the removal of his endotracheal tube (ETT).  The timing of how long the weaning process will take is unknown, but we are so thankful for his strides thus far and hope for continued good news everyday.   For Caleb, the saying has always been "slow and steady wins the race". 

I am grateful to be able to tell you this news of his stabilization on the vent, but saddened to report that his brain bleed and hydrocephalus has gotten worse.  After two unchanged head ultrasounds (the last being after his CDH surgery), we were optimistic that the brain bleed and hydrocephalus would resolve on it's own.  Unfortunately, this adds another level of complexity to Caleb's already difficult road to recovery.  The primary characteristic of hydrocephalus is the excess accumulation of cerebrospinal fluid (CSF), a clear fluid that surrounds the brain and spinal cord.  The excessive accumulation of CSF results in an abnormal widening of spaces in the brain called ventricles and this widening creates potentially harmful pressure on the tissues of the brain.  As a result of the hydrocephalus, Caleb will undergo his second surgery in a few weeks to have a ventricular peritoneal (VP) shunt implanted.  A shunt is a narrow piece of tubing that is placed within the fluid-filled ventricle inside the brain and the tubing is then passed under the skin into another area of the body, most often into the abdominal cavity.  The shunt tubing relieves pressure on the brain that has been caused by the hydrocephalus by draining the extra fluid in the brain ventricle(s) to a different area of the body where it can be absorbed more quickly.  The neurosurgeons do not seem to be in an rush to perform this surgery as they want to ensure he is stable on the conventional ventilator and that he has time to recover from his CDH surgery since one end of the shunt will be placed close to the other incision area.  

One concern is that shunt systems are imperfect devices and complications may include mechanical failure, infections, obstructions, and the need to lengthen or replace the catheter so regular monitoring and medical follow up will be required.  When complications occur, subsequent surgery to replace the failed part or the entire shunt system may be needed.  In addition, hydrocephalus (along with his prematurity and CDH) pose risks to both cognitive and physical development.  However, many children diagnosed with the disorder benefit from rehabilitation therapies and educational interventions and go on to lead normal lives with few limitations.  Treatment by an interdisciplinary team of medical professionals, rehabilitation specialists, and educational experts is critical to a positive outcome.  The uncertainty, as you can imagine, is extremely scary and creates a new level of anxiety for me...but he has already proven to be a fighter and I know he will surpass this obstacle too.

Much like going back to work after Brody was born, tomorrow will be an extremely difficult and emotional day for me.  As much as I know it is the right decision, I would rather be spending my days next to Caleb while he continues to make amazing progress and prove that he is truly a miracle.  It is comforting knowing that he is in great hands at the Hopkins NICU, but it will be important for us to remain his biggest advocates as we are the one thing constant in his life since the doctors, nurses and respiratory therapists change frequently.  Although this decision is tough now, I will be thankful to have saved my leave for when Caleb is finally released from the hospital as it will give me time to adjust and bond with him at home.  Just the thought of my new daily routine of going to work, visiting Caleb at the hospital and spending time with Brody at night is exhausting...

Pictures of Brody's 1st Day of Kindergarten