It would seem that as of this week, my daughter has officially become a caregiver thus establishing a second generation of caregivers in our family. In reality, she has been a caregiver for many months now, but with the hospitalization of her son, my grandson, it now seems official.
Eli will be one year old on Memorial Day. He is full of energy never wanting to stop exploring his world. He notices everything and remembers what he sees. He’s becoming independent crawling wherever he wants to go with determination. He pulls up and walks around things holding on so it’s just a matter of time before he takes off running across the floor. He has a smile that will light up the room. He LOVES people. He has never met a stranger (yeah, that means we will have to watch him closely) and he makes whomever he sees feel as if they are the most special person around. He’s adorable. He also weights only 15 pounds (he weighed eight at birth) and is the size of a 5-6 month old. He stopped growing around five months. While most children by age one are eating finger foods and sucking down 7-8 ounces of milk, we’re lucky if we can get 3-4 ounces in him at a sitting or 1-2 teaspoons of level 1 baby food. He just won’t eat and what he does eat, he burns off.
Until last week he was classified as “failure to thrive” with stunted growth. He grew a little in height but did not put on any weight and was then reclassified as mildly malnourished. With malnutrition, if it progresses in severity, it can result in organ impairment or collapse and brain damage–all serious stuff. So he’s now in the hospital with a feeding tube trying to boost his nutritional status. If he doesn’t drink at least 3.5 ounces at a feeding the rest is added by feeding tube. At night from 9 p.m until 7 the next morning he gets a continuous flow of formula (about 2.5 ounces per hour). The process seems to be working. He has put on 2 ounces since he was admitted on Thursday; however, he still does not take the food in himself so that tube is going home with him.
Since Eli was born, he has had difficulty with his feeding. When very young his cried a lot and could not be calmed very easily. Then he realized he could refuse to eat. Now he takes in just enough to no longer feel hunger (or so it seems) and then he clamps those little lips like a vise–so something is wrong but what, we do not know. Therefore, Sarah, his mom, has officially become a caregiver.
All moms (and dads), of course, are caregivers–without them children would have a difficult time living very long; however, when a child develops special needs, that caregiving challenge doubles or triples. Like me, Sarah rarely gets adequate sleep. Eli does not sleep well and needs assistance to fall asleep (we now know that is probably due to acid reflux causing him discomfort). She breast feeds so every night around 4 a.m, she has to pump to make sure he has enough to eat since breast milk is his only nutrition. Since he’s so active, he needs constant interaction and observation even with the help of baby safety devices (it’s amazing how he gets around those things). She has to fix him special formula to supplement her milk. Feeding him takes 1-2 hours to get 3 or 4 ounces in him. Then once he has finished with milk, she has to try the baby food. Once that is done, it’s time to get the next bottle ready, so on and so forth.
Eli will likely be in the hospital for 1-2 weeks while they see if he continues to gain weight and while they try to determine why he won’t eat in the first place. Once he comes home, Sarah will be managing his feeding tube. If he pulls it out (which he has done every day he has had it) it will need to be reinserted. That takes two people. Since I have had more experience inserting feeding tubes in my former nursing career, I offered to do the insertions for her (which she gladly accepted). It’s going to be very tough on us both because it’s not fun for him or us trying to get that tube through his little nostril, down his throat and into his stomach and not his lungs. Being nurses, we both know if it comes out while he’s feeding, he will likely get aspiration pneumonia which could be critical. There is also the trauma associated with the people you trust holding you down and forcing a tube down your throat. That’s traumatic for us all actually.
As a second generation caregiver, Sarah knows how her life will be centered on her charge. She will eat and rest only when her patient does not need her. Her first priority will be her patient; her child; and ensuring that he gets the care he needs as safely and expertly as possible. All this she will do while at the same time probably neglecting her own health. She found out the Monday before his admission that she has osteoporosis. She has already broken three ribs just by bending over things. If she falls, she could break something else that will interfere more with her life. They currently have no idea why she has developed osteoporosis at 28 years of age so it’s important for her not to ignore this.
That’s where I come in. I’ll be her backup caregiver for Eli as she is now my backup caregiver, (along with Lynn’s son, Eric) for Lynn. We will be the other’s support system and resource. While I never wanted my child to have to become her child’s caregiver, I know he’s in good hands. I also know that God will give her the help she needs to make it through this. She has a wonderful, supportive husband and other family members she can also call on for support so though it won’t be easy, she’ll make it though and hopefully this will be a short ordeal without long-term consequences.
I hope so. Having one full-time caregiver in this family is quite enough….