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!!!