The Podge Files: Baby Peter: Days 7-8 Update

by Tracy on Tuesday, October 11, 2011 at 2:08am

Happy Birthday, Peter!

Peter is one week old today, and we have loved every minute spent with him. I spent a glorious afternoon with him sleeping on my chest in the NICU as I laid in a recliner and we took a nap together. Heaven. Nothing is sweeter than having your precious baby’s head right under your chin to rub up against and feel their little heart beat against your own chest. It’s a moment I want to remember forever.

Peter got his first piece of mail! Unfortunately, it was an unexciting letter from our insurance company about his approved health care and treatments. But Peter was still excited and proud of his little letter.

Zach and I had a little birthday celebration with Peter this evening, and then had a Family Home Evening lesson about obedience together (one of my favorite principles). I took the opportunity to teach him my favorite hymn, I Stand All Amazed, and we sang it as our opening song.

Peter is eating, almost exclusively, pumped breast milk with extra calories mixed in. They switched him from a feeding tube that they changed daily to a longer-lasting tube that they change monthly. They have also moved the patches that hold his nasal canula in place to farther down on his face so that the tubes don't push in his nose as much. He was at 5lbs exactly this morning, and is at 1 litre on oxygen. Go, Peter! They are still giving him lasix, which they attribute his great progress to.

They are continually lowering the amount of oxygen they are giving him in an effort to wean him off it enough for us to be able to take him home. The oxygen equipment the hospital uses has a much higher capacity than the one that Peter would be using through hospice at home, so they need him to get to the range that the hospice equipment is at.

Taking him home: this might sound great, but initially when the topic of taking him home with the help of hospice care came up on the second day after he was born, I was really scared of the thought. First of all, the idea of putting him down for a nap at home, and then coming back to get him up and finding him dead was a thought and experience I could not handle emotionally. Being the one solely responsible for his care and life was something I was not yet ready to handle. The nurses and doctors here in the NICU are 100% trained and capable of caring for him perfectly and knowing how to respond to an emergency, and even if they teach me how to change his feeding tube, mix his milk and feed him, or how to respond to a serious problem, there is just no substitute for a trained professional in the event of an emergency. They can teach me all they want, but in the heat of the moment, panic can erase all previous knowledge.

The other day we met with the hospice worker to learn more about the program. I had heard of hospice, but didn’t really know anything about what is was exactly, or what they did. She has previous experience caring for several children with Trisomy 18 (which is very reassuring), and is a trained nurse who does hospice care for infants and children. She explained that if we decided to use hospice, she would help us adjust to taking care of Peter at home, give us additional training on caring for Peter, and would be available to call and have come over any time, day or night. This alone was a huge relief to hear. Being alone in a crisis situation is a huge fear of mine, so I was glad to hear that trained help would be available whenever needed. The hospice worker is available to come over as much as the parents need, once a week, several days a week, etc. There are also volunteers who usually have had a loved one in hospice care themselves in the past, who are willing to come over to help out at home, run errands, etc. The focus of hospice care is to help individuals who are terminally ill to be as comfortable as possible in their own homes as they progress towards death. There are some differences in infant and geriatric care in the sense that they allow more to be done for babies. The focus is on making them comfortable though, not trying to prolong their lives, so if parents have their child on hospice and then decide that they want their baby to have heart surgery to fix their heart problems, then they are kicked off hospice care. Basically, it is only for people who are ready to let nature take it’s course, with minimal interventions. That being said, it’s not like they unplug the baby’s air, stop feeding him, and let him die. From my understanding insurance covers the cost of hospice care.

I also had some concerns about taking care of Peter and also being able to meet Lucy’s needs. Our doctor pointed out that taking care of Peter would not be a whole lot different than if I was taking care of a healthy baby and Lucy. Duh. When he said that, it really put it into perspective. Peter sleeps a lot, has his dirty diapers, eats every 3 hours, and that’s pretty much it. He doesn’t demand a lot of attention, and doesn’t have many extra needs. A healthy baby would probably do those same things and also cry a lot. Peter is as quiet as a mouse. The only extra work would be me pumping milk and feeding him (which is 15 minutes of pumping every three hours, and only a few minutes for him to eat), and keeping a watchful eye on his feeding tube and breathing. His lasix is given orally through his feeding tube, we would have to change his tube periodically (or have the hospice worker do it if neither of us is comfortable doing it), and that is pretty much it when it comes to extra care. I would say the main difference will be that caring for Peter vs. caring for a healthy baby is that it will be significantly more taxing emotionally. There is a lot more stress and heartache involved in this scenario, which I anticipate will be draining emotionally as well as physically, but hopefully will not significantly hinder me taking care of Lucy’s needs as well. Not to mention, that I have to maintain my relationship with Zach and work on making sure we continue to grow closer together though this experience, and not farther apart. So far, so good. I don’t anticipate that being too much of a problem, as Zach has been wonderful and completely supportive as we both deal with this heartbreaking situation and spend as much time as possible making happy memories with our beautiful family.

After talking to the hospice worker, I felt a LOT better about the idea of taking Peter home and caring for him ourselves. I am not 100% ready to take him home today, but I am a whole lot closer, and I feel confident that when Peter gets to the point that he is eligible to come home, I will be ready and eager to take him home.

Happy birthday, my sweetheart.