Two Steps Back

You’ll understand why I don’t have a picture of Victoria tonight when I explain what our afternoon has held.

Everything seemed great during our visit at 1pm, however, when we saw Victoria at 5pm we knew something was wrong. Her heart rate was nearing 220 and her little chest was working so hard and fast to get breaths. Mark and I were very concerned and voiced this to our nurse. She had been concerned also and let us know that she and the doctor had talked several times during the day. Apparently, Victoria had shown signs of this condition earlier in the day and we had not been there during those episodes. The nurse called the doctor and he immediately came to talk to us.

From Victoria’s x-ray, she still had a partially collapsed right lung. It had not gotten any worse, but had stayed much the same. The doctor also explained that babies with Down’s sometimes have some extra tissue (glottal flap) in their airway that can become swollen after surgery and after having a breathing tube. This could’ve happened in Victoria’s case. So, this possibly being an issue added onto her right lung being partially collapsed … Victoria was just tiring out.

The doctor initially tried to put into place a CPAP, but Victoria was so active that he knew it would be difficult to maintain the CPAP in its position. At that point he approached us about putting in a breathing tube again. We, of course, agreed because we saw the distress that Victoria was in. We left the unit so they could intubate Victoria. After about 20 minutes, the doctor called us back in to see Victoria. She had been paralyzed for the procedure so when we went in to see her, she was lying limp on her little bed. It broke our hearts to have seen Victoria in such distress tonight, but to also see her limp again … our hearts broke at that sight, too.

The doctor assures us that she is stable and says that some babies take a little longer to wean off of a ventilator. In 48 hours they will attempt to remove the breathing tube again. If she has problems with the second extubation, they will bring in an ENT to make sure that her glottal flap isn’t in need of some attention.

This road is turning into a longer road than we expected. However, the doctor assures us that this is not an abnormal turn of events for a baby with Down Syndrome. He explained that her heart looks great, so this is not a heart issue anymore. This is a respiratory issue.

Pray that the Lord gives Victoria’s doctors and nurses amazing wisdom concerning her current condition. Pray for healing for her little body and strength for Mark and me. This afternoon was very emotional for us. We continue to ask the Lord to help us be strong for our little one.