This Crazy Rollercoaster Ride

This morning when we went to the NICU we were in high spirits. Yesterday was a good day.  When we arrived the doctors said they were going to try to extubate Avigayil. They felt she was strong enough to try. So we went to the family room to sit and pray. Extubation is a big step. It would mean that she could breathe with little or no support and would be a major step toward recovery. It would also be a big step toward my being able to hold her, something I have not yet been able to do.

After ten minutes we came back to find her breathing with just a CPAP machine. This was a very good sign. The doctors seemed encouraged. We were warned not to touch her since they needed to take blood gasses in a few minutes and she is very sensitive. If she got upset her blood gasses would be off. We sat and we hoped and we prayed. The nurse took the blood and went off to do the test. A few moments later she came back and announced that they were good! Avigayil could stay extubated.

Extreme happiness! I was over joyed. I felt that so she was finally on her way. Soon they would take out the arterial line and I would hold my baby girl for the first time. I was flying. For the first time I also heard my little baby cry. It was barely audible but she was crying. I was so full of happiness, joy and relief. Our best day yet.

Then it happened. The monitors started to beep. The red light flashed. Her O2 sats started to fall. In a few seconds my baby girl was no longer crying but lying still and turning blue. Such intense happiness turned to fear then sadness, then resignation. We were rushed out of the room and the doctors grabbed the resuscitation equipment. I couldn’t keep the tears from falling as we walked back to the family room to wait. Behind me I knew what was happening. They were resuscitating and reintubating my baby. She had crashed. She couldn’t breathe.

At first the doctors were just as upset and puzzled as we were. After doing some x-rays and tests the found a edema on her vocal cord that had caused it to collapse. This can be a complication of intubation. IY”H ( With G-d Help) they will start giving her medication tomorrow night to combat it. Now she needs to rest and recover. If all goes well we will try again on Sunday.

In the meantime I am left to reflect on how quickly good days turn to bad here. I know it can happen the other way around as well. I know that today will pass and tomorrow will be another day. However, I can’t help but cry. The complete physical and emotional exhaustion that is the NICU is hard to describe. I don’t think anyone who hasn’t been here before can really understand. The NICU is a battle field where wars are fought every day. Are there casualties? Yes. There are casualties of all kids. When will this intense struggle end? No one can say. In the meantime, I sit by my daughters isolate and beg Hashem (G-d) for mercy. For mercy for my baby, for mercy for me, for mercy for my family, and for mercy for all the other parents fighting parallel battles. May all of our children come home, happy, healthy and soon.