Sunday

Today I am being discharged from the hospital. Today we are going home without our baby. This is the hardest thing we have ever had to do. We take comfort knowing that Eli continues to get exceptional care and in knowing that we will be calling the NICU every 30 seconds.
Eli's numbers have remained the same which is good. In fact, it means the doctors were ready to start weaning various medicines.
Last night they began slowly weaning the two blood pressure medications. By this afternoon he is off the blood pressure medications.
They also decided to start weaning the nitric oxide. His level was at 20 and they began taking down the level by one every hour. At midnight he was at level 18 and the weaning was going well. By 6 a.m. however his blood gas came back and they decided to go back to the nitric level of 20.
This is the NICU roller coaster. The one step forward one step back dance.
Because this afternoon they wanted to try weaning the nitric again. His level has been taken down to 15. This may go back up again but right now we are happy to see this progress.
They are also starting to tweak his vent rate. The goal is to keep lowering his rate so that he will start to breathe on his own. They have also lowered his dose of sedation so that he wakes up a tiny bit more and can learn how to take over the use of his lungs. We hope Eli will take on some of his responsibilities.
These things have all happened in the last few hours. We are terrified that this is just the top of another roller coaster drop.
It is so hard to rejoice when darkness lurks.
Your joyful and loving words are what allows our hearts to soar if only for a stolen moment. Our minister, Father Cutter, came to Eli's room today to pray over his tiny body. We hope Eli can feel how much he is loved.
This feeling of helplessness is overwhelming. When you can't comfort your baby, can't touch your baby, and can't breathe for your baby, you are truly lost.
All we can do is pray. We feel your love and prayers. They are working.