Now that we are home and Isabelle is sleeping I need to do some updating. We also will be skipping weekly book review this week because the last week has been quite hectic. We will begin again next week and with the sisters reading books together.
Our past week after they decided we would be able to go home was hectic, confusing and frustrating. I think the anticipation of going home made us less patient and more easily frustrated. Also we really had to keep track of all the people who saw us because each time a new shift started with new nurses it was like we started over again.
First there was the issue of feeding. For a week after the NG tube came out, Isabelle was losing weight. Each doctor had a different opinion what we should do. Should we wake her up to feed her more often? Should we put her NG tube back in? Is she dehydrated? I stayed overnight to see if maybe letting her feed on demand for 24 hours would make a difference. She lost more weight after that night. After that I wondered if my breast milk was fatty enough, which is a hard thought for a mother to have. We wee also really worried they would put an NG tube in before sending us home. As much as the doctors said its rad to manage I really did not feel comfortable with that. In the end we decided to fortify the bottles of breast milk she would get. The first night we did that she gained 3 ounces. The moment she started gaining again, the doctors were happy to send us home without an NG tube. As soon as she started gaining weight the doctors were all on board with getting us home as soon as possible. But then there was the other issue of how to get Isabelle home.
Before we had figured out the feeding issue we started probing the doctors and nurses to figure out how we were getting home. Each person seemed to have a different opinion. We were asked to bring our car seat in last Wednesday. When we first sat Isabelle in it, one nurse thought that she wasn’t breathing well. She wanted us to do a fit test. Normally fit tests are used for premature babies. Because the car seat straps go directly over the omphalocele, it was unclear whether it would be safe or comfortable for Isabelle to sit in the car seat. A requisition was called for physical therapist to come in. The PT did not feel comfortable with the case and then when she came she actually thought that Isabelle was post operation. After seeing Isabelle and her car seat she decided to call occupational therapist. She had come to see us afterwards saying that she had called OT and they had someone with experience with an omphalocele and that they would come see us Friday. She also mentioned that she was now on vacation until Wednesday. So we waited Friday and no one came. Then we had to wait through the weekend. On Monday our nurse was speaking to the charge nurse outside our room. They mentioned the PT that had seen us the week before by name and said that we were waiting for her to come. Luckily we were there to hear the conversation or else we would have waited until Wednesday for the PT to be back from vacation. There was also no requisition for OT in the system yet, so the nurse finally put one in. Once they had the requisition the OT came Monday morning and made us a little brace for Isabelle to wear while she is in her car seat.
The last issue we had to sort out was whether or not cardiology needed to clear Isabelle for discharge. At the last ECHO they had found a PFO and also a PDA. They also mentioned that Isabelle’s heart might have a bit of higher pressure on one side. All these issues are minor but worth following up. So there was another ECHO ordered for the end of March. When the talk of discharge started the neonatologist moved the ECHO up to Friday. Friday came and went and no ultrasound tech came. Over the weekend, the neonatologist mentioned that we cannot leave the hospital unless the cardiologist clears us. So when we saw the ultrasound tech in the halls we asked if he was coming to see Isabelle. He didn’t have a requisition to see Isabelle. We talked to the neonatologist fellow and she was just as confused as we were and ordered a quick requisition. Then the neonatologist came back and told us that the cardiologist had actually come late Friday evening and said Isabelle doesn’t need to have her ECHO now, but at the end of April as an out patient. I guess no one updated Izzy’s chart.
Once these issues were sorted out things happened really quickly. The release papers were drawn up. The home care came with some supplies. Requisitions were sent to all the doctors and nurses that will now follow Isabelle’s case. Isabelle will have one cardiologist, one surgeon (the same surgeon we have always had), one paediatrician, the home care nurses and the public health nurses. At 11:30 we had a brace. By 3:30 we were out the door. Papers were signed, our room cleared, we went home.
Being home has been great so far. It’s been a different kind of tired and a different kind of hectic. But I will save that for another day.