One thing I forgot to mention last week. In addition to not gaining weight the last month, we also had low embryonic fluid. My OB kept a very close eye on us, and when he said that Lion would do better in the outside world rather than in, we were scheduled for an induction.
Once Lion slipped into the world, the nurse said, “Did you know your baby has a cleft lip and palate?” I shook my head, feeling very . . . I’m not sure of the word. Dazed comes to mind, but that doesn’t quite describe the feeling. (At this point, I had been awake for almost 24 hours. Not to mention labor and delivery.) I waited and waited to here Lion cry. My heart pounded as I worried. It took longer than I would have liked, but Lion finally cried.
The nurses took him over to their little table to take his measurements. Then they left him there. His little arms and legs were moving. He was crying, and my heart was breaking. I wanted to tell Hubby to get over there, but I could tell he was feeling as confused or dazed or whatever the word is as I was. Later Hubby said he was extremely worried about Lion.
Finally, they wrapped Lion up and placed him in my arms. He turned his little head and looked right at me as if to say, “I’m here, Mom.” Those who know newborns know that that doesn’t happen. They don’t/can’t really focus on anything that young, but there was no question he was looking at me.
What a precious child I held in my arms. A child I didn’t know how to care for. So, while rubbing his forehead I began to ask questions of how to feed and take care of him. I honestly don’t remember the answer, but it didn’t take the nurses long to take him back and admitted him into the NICU. (I didn’t know that’s what they had done. Hubby was there when they admitted him for low blood sugar. I didn’t find out for a few more hours.)
Hubby and I then got a couple hours of sleep before they had me move from labor and delivery to recovery. Within another two hours, the doctors and specialists began coming in. We were told that in addition to the cleft lip and palate, Lion’s heart was on the wrong side and he was tachypnea or rapid breathing. We had a pediatric doctor come tell us what they thought was going on, meaning the possibility of trisomy 13 or 18 but they wouldn’t know for sure until blood work was done and that his heart was on the correct side, just way up in the corner making it seem like it was on the wrong side.
While waiting for the test results to come back, we met with a pediatric plastic surgeon to go over the process of repairing the cleft lip and palate, a speech pathologist to help us learn how to feed Lion in the interim, there was an ECHO of his heart taken, and a brain scan. Then once the results came back positive for trisomy 13, the doctors came for different reasons. What our options were for surgeries if Lion decided to stick around for a while. The do not resuscitate order. Life expectancy. Whether or not we’d like Hospice to become involved, etc. etc.
We made the decision to take Lion home. We stayed for in the hospital for four days—
- birth & not knowing
- knowing the results and making decisions
- watching and learning how to care for Lion (changing a feeding tube, how to use a feeding machine, what to watch for in his breathing, i.e. what to do if he turns a grayish-blue which he did, monitoring oxygen levels, etc)
- caring for him on our own with the NICU nurses across the hall
In that time, we gathered the family that was in town and gave Lion a name and a blessing in the hospital. What a sweet moment that was. Then we got ready to go home.