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!