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.