AGE: 1 week (26 weeks, 5 days gestation)
Weight is 770 grams/1 lb. 11.12 oz. (Birth weight: 760 grams/1 lb 10.8 oz.)
Weight is 840/1 lb.13.6 oz. (Birth weight: 760 grams/1 lb 10.8 oz.)
I will start this update saying that we are ending the evening with a net positive in regards to breathing, but we had a 10 steps forward, 9 steps back kind of day.
Both boys were on and have been on ventilators, but were at the highest ratings this morning. The doctor wanted to try switching them to an oscillator which is another type of breathing machine that is easier on their bodies. Lochlan responded well and is still on the oscillator. Lex did not respond well. He was started on morphine to calm him, dopamine to treat a low blood pressure and was put back on his ventilator. He has since calmed down and his readings are better this evening than they were this morning which is great. He is still on morphine and dopamine, but is relaxed and resting. He will continue to be watched closely.
Lex started his first or three doses of ibuprofen at 3am today in order to get his PDA (unclosed heart valve) to close. This is our second type of therapy, first being Tylenol. There is about a 30% chance that the ibuprofen will work. Ibuprofen is a stronger drug, but has more side effects. So far, Lex has not shown any negative response to the ibuprofen. The boys will receive most of their nutrition/fluids through their PICC line while on Ibuprofen because they cannot take feeds will on this medication. They will retain fluids while on it and likely gain water weight and not real weight until they are off. A follow up echocardiogram will happen Thursday to see if we have made progress.
Lochlan received his results from his echocardiogram today which also showed his PDA is larger which means the Tylenol is not working. He will also begin the 72 hour ibuprofen therapy. Lochlan’s digestion issues haven’t flared up and he (and brother) gained weight. Both boys are above birth weight right now.
I anticipate turning a major corner this week for the boys PDA and am focusing all my energy on that idea. We have one other option to close the PDA if the ibuprofen does not work, but we will cross that bridge if we get to that. Prayers appreciated for smaller PDAs so the lungs and heart can be less strained.
“Let the warriors sleep for when they awake, they will move mountains.”