Prayer Request

Both boys not doing as well as anyone would like. Both have had increased episodes the last couple days and last night it got worse including multiple low bradys. They are taking actions on both boys and prepared us for some additional actions they may take if they do not start improving.

Eli: 1) Had blood transfusion. We were told this would likely eventually happen, maybe several times. Almost all babies our boys age require it since they become anemic as they do not produce blood cells fast enough. Hope here is that his body accepts the transfusion and that the increased blood volume helps get his oxygen saturation up and carries oxygen to all parts of the body better. 2) they stopped all nutritive feedings and went back to IV. Eli's stomach has been getting very swollen. While this is somewhat caused by the cpap, in his case it appears to be more than just that. There is a severe condition in the intestines that they worry about for boys our age. They have done X-rays and blood workups a couple times in the last week and they have all been negative. He also is not showing any other symptoms. However, because his swollen stomach can prevent him from being able to fully fill his lungs and can lead to the more serious condition they keep checking for, they are going to stop giving him nutritive feeds for a bit and see how it goes.

Jack: 1) also received a blood transfusion. Has had significant increase in Brady's and desat. Hoping that the increased blood volume can decrease the episodes in regularity and severity. They have considered and are close to putting him on the ventilator. This is the next step if he does not start to improve. 2) I have written before about both boys PDA murmurs. This is the vessel in the heart that is open and would have closed had they been full term. Jacks opening is much larger than Eli's and there is some thought that if it has gotten larger it could be contributing to his desat and Brady episodes. The plan was to look again on Thursday, but if his episodes do not go down, they are going to move that up. The first step of intervention is a couple days of medicine. The second step if required would be surgery. For now, they are not going to do either as they would like to see if Jack can improve from the transfusion first.

Jack's belly is swollen slightly as well, but not as much as Eli's and the belief is that his may be entirely caused by the cpap.

Needless to say, this has Kristin and I concerned and bummed. We are doing our best to trust in God and remind ourselves of His promises. We know this is temporary, in more ways than one. We are a quarter way into the 100 day journey, but days like today feel longer than some of the previous weeks. I will post another update tonight, though we do not expect a lot of change from the above until tomorrow.