The quint’s first 2 weeks outside of Mama have been quite active. Frank and I have truly gotten a crash course in what it is like to be NICU (neonatal intensive care unit) parents. The highs are very high, the lows are very low, and often times they occur within minutes of eachother. We have been blessed with the time away from work to spend 8-12 hours everyday buzzing around the NICU watching nurses, taking part in our little ones’ care and meeting with the multidisciplinary team. Our most recent post announced the arrival of the V5 and told the story of our 24 hour honeymoon with five seemingly happy and healthy babies. After day 2 however, the honeymoon was over.
Here is a summary of some of the medical trials and tribulations our quints have experienced in their first weeks:
- Spontaneous Intestinal Perforation (SIP): Two of our little ones had bowel perforations within the first 3 days. Both required emergent surgery, which they handled well. One of the SIP’s may have been caused by NEC, which they found in surgery. The other occurred higher in the small intestine, and the informed us that this may result in a feeding intolerance later on.
- Necrotizing Enterocolitis (NEC): NEC is one of the most common GI diseases in newborns and preemies. It is when the bowel does not get adequate blood flow (Ischemia) and begins to die (Necrotize). Early and aggressive treatment is imperative because it can result in dire consequences – NEC is the second leading cause of death in premature infants. The good news for our quints, is that they did identify it early and were able to remove the affected portion completely.
- Gastritis versus Bleeding ulcer: Inflammation of the stomach wall and ulcers can be common as the immature digestive track is learning how to work. One of our little girls experienced this and as a result we found blood in her gastric residual. This appears to be resolving with the help of Zantac.
- Spontaneous Lung Perforation: One of our quints got a hole in their lung, which required emergent chest tube placement. Luckily, this incident resolved quickly.
- Complication of PICC: PICC lines, or Peripherally Inserted Central Catheters, generally have limited complications. So, yet another rare event for one of our girls where her PICC moved from her heart to near her shoulder. This resulted in infiltration into her subcutaneous tissues and ultimately her lung. She became very swollen as her upper body filled with fluid. But, this tough cookie fought it hard and it appears to have resolved rather quickly.
- Grade 2 Intraventricular Hemorrhage (IVH): Infants born before 30 weeks are at the highest risk for brain bleeds. Grades 1 and 2 have similar outcomes and typically resolve within a month. They do cause an increased risk of developmental delay but not much more than from being a high order multiple. We continue to pray for the health of our little one diagnosed with a Grade 2 IVH.
- Apnea and Bradycardia: Apnea is a pause in regular breathing lasting more than 20 seconds and bradycardia is a drop in the heart rate. All of our quints have experienced this at some point. “A’s and B’s” are typically caused by an immature nervous system. The good news is that all of our children are learning to pull themselves out of these events without stimulation (aka rubbing their backs).
- Respiration machines: All of our little ones had to be intubated after day 2, which was expected. Unfortunately, one of their endotracheal (ET) tubes moved too low and collapsed their little lung. This has since resolved. All of them are continuing to advance through the variety of machines, but I thought it was noteworthy to introduce inquiring minds of the different types.
- Intubation with an endotracheal tube (ET tube) with a ventilator
- Intubation with an ET tube and continuous oscillation
- RAM cannula with NIPPV (Nasal Intermittent Positive Pressure Ventilation)
- Nasal Cannula on CPAP, Continuous Positive Airway Pressure
- Nasal Cannula with higher concentration of oxygen than room air.
Needless to say, the first two weeks have been quite eventful. Although the events listed vary greatly in severity, it is difficult to watch our little ones experience any hardship. At the same time, it is certainly empowering to watch our children fight hard for life. Their resiliency is awe-inspiring! Today, we can say our little ones are collectively in the best health they have been since birth. You will get to see and hear more about their progress and personalities in our posts over the next week or so.
Oh, and one more update for everyone. We learned that our insurance company has agreed to cover the quints birth and NICU stay for each of our children. They have also agreed to cover medical transport of our children back to a NICU in Madison once they are stable enough to bring back to Wisconsin. What an answer to prayer! We now are hoping that everyone will be healthy, and ready to be transported at the same time.
Thank you for praying along with us through both the euphoric highs and near-death lows on this wonderful roller-coaster of a journey,