As expected, our experience thus far has been a horrible roller coaster of good and bad days filled with a myriad of emotions. The boys are now 2 weeks and 6 days old and it has undoubtedly been the worst few weeks of my entire life. Watching my precious little babies struggle for every breath they take has been indescribably heartwrenching. At the same time, it absolutely takes my breath away to witness their unbelievable strength and resiliance as my boys fight through every obstacle they face. It truly has renewed my faith in miracles.
Both boys have respiratory distress syndrome (this essentially means their lungs are too immature to breathe on their own) and are on the ventilator and in an isolette. They were temporarily upgraded to the CPAP (Continuous Positive Airway Pressure) a few times since their birth but usually only lasted 24-48 hours and had to be moved back to the ventilator as their respiratory drive just isn't mature enough. To briefly explain, the ventilator entails an endotracheal tube being inserted through their mouth and into their windpipe so air can be sent into their lungs. The doctors decide how many extra breaths the boys need to supplement their own natural ones, how much force or pressure each breath should deliver to open the air sacs and how much oxygen should be mixed in. While on the CPAP, they take all of their own breaths but a mixture of air and oxygen will flow into their lungs, under pressure using nasal prongs rather than an ET tube, and keep them from collapsing when they exhales. The ventilator is a double edged sword; while it's a life saving effort in that the boys could not survive without the assistance it provides, it is extremely harsh on their tiny lungs and can often lead to long term lung damage. The goal is to get them breathing on their own as much and as early as possible.
Our first bit of bad news came when they were just 9 days old. Logan was diagnosed with a moderate sized Grade IV brain bleed on his left side and a Grade III bleed on his right side while Landon was diagnosed with a small Grade II bleed. Brain bleeds (or IVH's; Intraventricular Hemorrhages) often occur in micro preemies because they have extremely immature brains thus causing their fragile blood vessles to rupture easily. IVH is classified using four grades of severity based on the amount and location of the bleeding; Grades I and II are the most common and many times will resolve themselves with minimal to no complications or long lasting effects. Grade III and IV bleeds (such as Logan's) are devastating and signify irreversible brain damage. It will be many months or even years until we know the extent of the damage but just the fact that he survived at all is a true testament to his will to live. Many babies with Grade IV brain bleeds succumb to the injury within hours or days when their organs begin to fail and their tiny bodies slowly shut down but our little fighter suffered through it silently, showing no outward signs or symptoms. He continues to amaze us every day.
Their next struggle would be with their PDA's (Patent Ductus Arteriosis), which is a small blood vessel connecting the pulmonary artery and the aorta that typically closes within a few days after birth. so the baby's blood circulation can be rerouted as needed. However, in many preemies the PDA remains open which can lead to an excess of blood being shunted into the lungs making breathing extremely difficult. It can also lead to complications such as pulmonary edema, chronic lung disease or congestive heart failure. Unfortunately neither Logan nor Landon's PDA closed on their own so they were both given two courses of Indocin, which is a medicine that has proven to be highly effective in rectifying this situation. We were so relieved to discover a few days later that the medication had indeed worked and both PDA's had closed. However, as we have come to learn all too well, a good day can all too often be followed by a horrible one. Unfortunately they both began to have some breathing problems shortly thereafter and an ultrasound discovered that against all odds, their PDA's had both re-opened. This meant that at the delicate age of just 18 days old, they would need PDA ligation surgery. Thankfully they both came through the surgery with flying colors and are doing relatively well with their recovery. Landon has been having some difficulty with his breathing and unfortunately was put on the oscillating (or high frequency) ventilator rather than the regular vent. The high frequency vent provides tiny quantities of air at rapid rates using lower peak pressures and keeps the lungs continuously inflated instead of delivering breaths at a higher pressure with normal patterns of inhalation and exhalation. Hopefully this is only a temporary setback and he'll be back on the traditional vent with his big brother in the next few days.
It astounds me that they have already known more adversity in their short 21 days than many come to know in an entire lifetime. My heart absolutely aches with pride and unimaginable love every time I look at them.
Top two pictures are Landon and bottom two are Logan
