When soon keeps getting further and further away
It is a beautiful, sunny day here and my two middle children are at a beach park with their dad while I am at the hospital with our youngest. Despite missing out on their fun excursion, I was in good spirits when I arrived at the hospital today. My little guy seemed to be making progress again on his feedings and I’d been feeling optimistic that he’d be home with us real soon, maybe even by this weekend. Then the doctors came by for rounds and I asked them that question I’d been avoiding ever since he missed his original release date a few weeks ago; when do they think he’ll be ready to come home? I knew I probably shouldn’t ask it, but I was feeling optimistic. Unfortunately, the answer I got wasn’t what I expected. “Based on his current trajectory” the doctors don’t expect him to be ready to go home for “at least two more weeks.” I think everyone present could hear my heart break as I gulped back tears.
“At least two more weeks” was not what I had expected to hear, not even close. Two more weeks puts us at the end of May, after Memorial Day, 12 weeks from his birth! The “at least” part signifies that it could be even longer than that and that there isn’t any chance it will be shorter than that. This means it could be June, it could be a full three months of him being in the hospital before he comes home! So many thoughts and emotions are going through me right now and none of them are good.
First is the thought of how unfair and wrong it is that my little baby has to spend the first three months of his life in the hospital instead of at home with his family. No baby should have to do that, yet I know there are some who spend far longer. I think of all the time we are losing together that I normally spend cuddling with my babies. I will never get that time back and it just feels like one more thing I have to mourn about how this pregnancy has turned out.
My second thought is about the logistics of dealing with two plus more weeks in the NICU. My husband goes back to work at the end of this week. He took his paternity leave when we thought the baby would originally be home and my mom left (after spending 8 weeks with us). We figured, even if he wasn’t home that week, surely he would be home at some point during the month my husband had off (thank you Microsoft for that) especially since his due date would come and go during that time. I’d arranged for my mom to come back for one more week next week, figuring the baby would be home by the end of this week, and thinking she would just help us adjust to having the baby home and my husband back at work. Now it seems she will be watching my middle children again while I continue to go into the hospital. When she leaves we still won’t have hit that two more week mark, forget about if it is more than that. So then what do I do? How do I deal with visiting the NICU and caring for my three kids at home? How do I get kids to and from school and care for my two year old who is home full time, plus get laundry done and meals made for my kids? I’ve already given up on trying to clean the house with all that is going on.
Then there is the impact on my three kids at home and how they will deal with another two weeks, possibly more, of living like this. Their lives have been in upheaval since the end of February, 12 weeks ago, when I was first admitted to the hospital. They’ve had Dad caring for them, then Nana, then back to Dad, then it will be back to Nana, and from there I don’t know. Meanwhile, my six year old, who has been having behavioral issues at home, has begun to have some of those behavioral issues at school in the past few weeks; he’s falling further behind in reading, something I used to work with him on a lot, but don’t have as much time or energy to now; and he doesn’t seem to be eating much. My four year old has begun to act out and it seems to be getting worse over the past few weeks, plus he’s begun to have “accidents” despite being potty trained for almost two years. God only knows how this is effecting my two year old since he can barely talk and probably can’t even remember what life was like before all this started.
I’m trying to not even think about the financial impact of all this. Yes we have good insurance (thank you again Microsoft), and we will probably just have to pay our deductible for all the medical expenses, but it is all the non medical things that add up and cost us. The hospital is a half hour away and gas is expensive. Driving to and from the hospital once a day (sometimes twice) gets costly. While I’m there, sometimes I eat lunch and that cost money since I don’t have the time or energy to pack myself a lunch each day. Then there are the evenings we are too tired to make dinner or life is too chaotic and nothing gets made, so we have to order pizza or some sort of take out. Of course, then there is the additional cost of the guilt induced outings with the boys, whether it is the individual “dates” like last week or an outing with all three of them to get a little gift to keep them busy, it all adds up quickly. I can’t even count how many times our bank account has hit zero or very close to it as we wait for the next pay day and pray we don’t need anything before then.
Lastly, there is the impact of all this that I tend to think the least about and that is the impact of all this on my husband and my mental state. We are exhausted, overwhelmed, and pushed to the brink of breaking, but we keeping going. We have little to no time of reprieve from all this. We are constantly going, from 5:45am when our first child at home wakes, it is nonstop go. Dressing and feeding kids, getting kids to and from school, cleaning and cooking, those are all just normal everyday events with kids, but then you add trips to the hospital, late night and middle of the night pumping sessions, and dealing with all the emotional and behavioral issues our older three are having. This leaves little time for our own emotional needs. I’m not even sure how we are going to function when my husband goes back to work and my mom is gone. Plus, being in the NICU for the past 10 weeks we have gone from being the new family on the NICU floor to the veteran family here. We have watched all my son’s neighbors around him go home while he still remains. The babies who were here when we got here are all long gone, while new babies have come in gone in their place. It is bittersweet to watch the babies around him go home. I am happy that they get to go home, but am sad that it still isn’t my baby’s turn.
At this point we are stuck in limbo. There is nothing we can do change the situation or make it better, all we can do is wait and hope he figures things out. That might be the hardest thing to accept about this situation, the inability to change or fix things. There is nothing we or the doctors can do to move things along, it is completely up to him. I know this too shall pass, but in the moment, it doesn’t help. People keep telling me that he will be home soon, but soon just seems to get further and further away. I long for this to be over and for him to be home where he belongs. So now I will attempt to reset my expectations and not get my hopes up. Of course, that is easier said than done. I just hope I’m not in this same situation in two more weeks because I’m not sure how many more times I can suck up the disappointment and reset myself.