New normal

One would think, given that I spend all day in the NICU with infants I can't really interact all that much with, that I would have all this time to blog and keep people updated, to remember and look back on these days. Clearly not working out. My days are busier than I would have expected. And I used to use this initially as a way to vent, then to celebrate our daughter, then to grieve, and then for prayer. And now, I don't know what I am feeling most of the time. A lot of overwhelmed with this jumble of emotions I don't quite know how to express. 

The boys are now 18 days old. Craziness. It seems like ages ago I was in that hospital bed fighting labor and trying to give the boys another day, another week. And yet time is going so fast. We are now back over birth weight!  Warren and Dean go back and forth for who is weighing the most on any given day. Warren is long and thin and Dean is shorter and more robust. But they are both growing and looking so much better than last week, less fragile. 

Dean is moving right along. He remains on room air with breathing assistance from the bubble cpap. He no longer needs a chin strap to keep his oxygen saturation high and is loving the freedom. He recovers quicker from his assessments with less help. And he has some lungs!  He can cry with the best of them. His feedings have progressed to 2/3 an ounce so they have stopped all IV supplements and removed his picc line. He's growing up so fast!

Warren is having a tougher road. His lungs were less developed from the beginning, requiring a second dose of surfactant. And then he was thriving. The past several days have been more difficult for him. He has gone up on his oxygen, currently at 32%, with more frequent desats (oxygen saturation dropping below 80). He has struggled with his feedings, going up and down, and is currently receiving all nutrition via his picc line. They will resume feedings today. He's had 3 chest X-rays so far, all normal, trying to see why he is struggling to digest and breathe. He has several episodes a day, 5 in the last hour, of apnea and bradycardia. This causes the scary sounding alarm to go off. The only me that sends nurses running. But he remains active and alert. And when I hold him, he gradually works his way back to room air. He is such a sweet boy and cuddles right up to his momma. Last week there were talks of him being ready to try breathing without the cpap, this week it was turned up. Up and down we go. 

So my day consists of the following: pumping, temperature check and diaper change on Warren, watch nurse mess with cpap and position, temperature check and diaper change in Dean, watch nurse mess with his cpap while he cries hysterically as if someone were stabbing him. This cycle takes 1 hour and 45 minutes and is repeated every 3 hours. Once each day I get to hold one of my sons during that in between time provided they are having a decent day and no other tests have been done.  During 2 other breaks I get food real quick. Which leaves me with this mid morning break to journal, read to them, etc. Unless they are having bad days and monitors are going off constantly. And the I spend that hour trying to help get them adjusted or staring down the nurse if she is not being attentive enough....

So we could all use continued prayer, especially little Warren today. And its not all stressful. Sometimes it is peaceful and wonderful. 

Andrew reading the Jesus Storybook to Dean last night during family time.