We are about to embark on the journey of caring for Foster from home and I cannot wait! It’s bittersweet to leave our hospital home, it will be lovely to be at home as a family and of course has been heartbreaking to learn that there is not much that can be done to help our little Foster. The fact that our doctors believe that little Foster’s disease is progressing and not responding to treatment is a reality that Brett and I along with our family, has had to face and learn to accept for the past month. Our doctors do not know what Foster’s life expectancy is at this point. However, it is mutually felt that he is “stable” or as stable as Foster can be, for the time being. And with that in mind, we would like to get set up to be able to care for Foster in a more loving and thriving environment during these times when it is safe to do so. We realize that Foster is sick but in reality, much of what is happening here can be done from home. We can check his vitals from home, We can support him with oxygen, offer suctioning, operate his feeding pump, monitor his blood ketones and glucose, administer medications and provide seizure care all from home. Of course with a little help (we’re in the process of hiring a nanny) because I’m not super mom and Brett needs to work. The fact is that there is actually very little that is done at the hospital for Foster, that we can’t do from home and after spending most of the past 5 and a half months in hospital, we’re really ready to start enjoying the limited time we may have with our child. Part of what has kept us in hospital so long has been that Foster has suffered multiple respiratory and cardiac arrests with seizures. And of course resuscitation during these events is a measure that we cannot provide from home (though we will have an overnight nurse in the house as the middle of the night is when Foster requires the most support). We’ve come to feel that some of the measures provided in hospital are not beneficial to Foster. CPR, while a wonderful resource in many situations (like if a child is drowning) isn’t going to cure Foster’s underlying disease. Having our child’s rib cage broken week after week to keep his heart pumping, doesn’t sit well with us. We want to provide all of the medical support we possibly can, to extend his life as much as possible, in a loving, non invasive, non harmful way. We want Foster to feel loved, enjoy being a baby, be cuddled and kissed, experience the sun and be a part of our family memories. And our doctors are in full support that this is the best way that we can support Foster at this time. So our transition has already begun. While we sort out all of the homecare details, we are allowed unlimited day passes and we have been moved into a care by parent phase in the hospital. So rather then having nurses run in every time something happens, we can care for all of Foster’s needs on our own, while still being in the hospital setting if we have questions. Foster came home for a few hours on Good Friday and Saturday and Easter Sunday and we have plans to take the boys to Telus Spark on Friday and hopefully the zoo as well if it’s nice out this coming weekend.
So now it’s time to decorate a nursery (something we haven’t had the chance to do yet) and finally be Mommy and Daddy, doing normal things with our boys! Having said that, there’s still equipment to obtain and funding to be approved and details in the works so we could still be in hospital for a while.
In my excitement to finally start experiencing and enjoying my little baby, I’ve been reading lots of baby blogs and articles online and I have to say, it’s not for me this time haha. That was totally my thing with Clay, I was really into reading up on everything baby, breast or bottle, co-sleeping or crib, cry it out or no cry but these hot topics all seem like really mundane issues when your options aren’t to cloth diaper or by huggies but rather will my baby live or die. So bare with me Mommy friends if I don’t relate at times 🙂 For example, I can’t breastfeed my baby because it’s not safe for him to eat orally or have large volumes in his tummy. So he’s fed through a feeding tube with the assistance of a pump. And I can’t offer my baby breast milk because he’s on a special diet to manipulate the presence of glucose and ketones in his brain to attempt to reduce seizure activity. So maybe it wont be “normal” outside of the hospital but it’ll be wonderful. This time around, parenting will be less about the little details and more about relishing in the moments. I can’t wait to start! Although I do love this place and will miss seeing our little hospital family of nurses and doctors and support people everyday 🙂 We’ve been told that any little cold or flu that Foster catches will likely require another admittance at the hospital because his body can’t handle what others can, so I’m sure we’ll be back lots.
Here are some pictures from the past weeks:
First evening stroll from the hospital.
Pretend talking with his cousin Jack.