Weekend from Hell

Milagros after a horrible weekend

This weekend was by far the most difficult Milagros has had. We almost lost Milagros 3 different times. We had no idea why she was checking out, but it was scary as hell. She would start to cry and lose oxygen and turn a dark purple, then her body would go limp. Respiratory Therapists and Nurses had to resuscitate her 3 separate times with a bagging technique where they manually deliver oxygen flow through a bag squeezed by hand. On Monday, Milagros's regular doctor came in and thought immediately to stop feeding breast milk and formula, apparently that is routine when a baby is in respiratory distress. God only knows why the doctors for the entire weekend did not stop feeding. On Monday morning we had a conversation with doctors that included removing oxygen support for her given that she appeared to be in so much pain and suffering over the weekend. We had hit rock bottom and everything seemed like a horrible option, we mentally and physically crashed and were exhausted. For each resuscitation we had been by Milagros's side signing and sometimes screaming for her not to leave us, while holding her hand and legs, caressing her head, it was a horrible experience that no parent should ever have to go through. It seemed as soon as breast milk and formula feeding was stopped on Monday and replaced by liquid electrolytes her situation really flipped on a dime. Yesterday and Today, her oxygenation is above 90% and she looks healthier. She is exhausted after this weekend and has been sleeping for what seems like the past two days. In order to avoid feeding into her stomach, nurses have placed a feeding tube through her nose directly into her intestine in order to prevent any major acid reflux event. For now we pray, count our blessings that Milagros is still with us. Pulmonary Hypertension and the affect all this activity has had on her heart are of serious concern. The strategy now is to try to stabilize and it feels like we are starting all over again. No baby should have to fight so hard, but Milagros is a fighter. Today her priest, her parents, brother and sister, cousins, grandparents, aunts, uncles and friends came to visit her by her bedside and continue to pray for her. we are blessed to have so much support for our angel. From the day she was born she has brought people together and maybe that is her message to us, that we have to stick together to get through difficult times, only Milagros knows what she is doing, the rest of us can just guess and cherish every moment :)

Milagros is currently on the following regimen of medications:

iNO - 20 PPM
Albuterol, every 6 hours
Biotene Oralbalance, as needed
Breast Milk / Formula, currently stopped
fentaNYL, constant drip and IV (every 8 hours)
LASIX (every 12 hours)
Heparin Porcine through PICC, continuous
ATIVAN IV, every 4 hours
Methadone, every 12 hours
PheNobarbital IV, every 12 hours
Ranitidine IV, every 12 hours
Sildenafil 7.75mg, admin dose, 4 times a day
TPN, continuos