On keeping Sally - Part 2

Sally was given her release from the hospital, so we headed home. It was so wonderful. She started eating consistently, and our whole family got to be together. I remember one day while Natalie was at school, Noah went outside and took me on an adventure through our yard. I carried Sally in a little sling, and we investigated all the things in our yard. He even showed me how strong he was by picking up this giant branch!

I remember feeling such a sense of rest that life was getting back to normal. My new baby was healthy again, and I was getting to enjoy sweet little moments with my family. 

The thing I did not enjoy was that I was now receiving very condescending advice. I surmise that, because my baby experienced a nutritional anamoly, people were assuming that it was actually my own ineptitude or lack of attention that caused the whole thing. I will never forget venturing out to church for the first time carrying Sally in the little sling mentioned above. I had used it with all three of my babies, and, though this model had been recalled because some babies had smothered, I felt confident in my attention to making sure the babies were always safely elevated within the sling and I was always very careful to make sure their airways were totally unobstructed. My mothering decisions and judgment were not sufficient for one of the ladies in the church, however. She mentioned to me that the sling had been proven to be unsafe. "Yes I read about that, but I....." she interrupted me before I could even finish a sentence. She actually continued to interrupt me and offer me LOADS of unsolicited advice on things so simple as how to hold a baby.....yes. I have been caring for babies since I was literally 9 years old, and I had to stand there and listen to this woman give me instructions on how to hold one. I was absolutely disgusted at the liberties she took after she assumed that an unforeseen medical problem was my fault. 

What I had needed in that moment was support and reassurance and gratitude to God in my presence that Sally had survived something that, had I waited probably just a couple more days, would have claimed her life. Instead I got criticism. What was even more irritating is that no one in my "group" stood up to my defense. They all just stood there letting this woman drown me in her gratuitous, condescending and even archaic advice. 

We went home and spent the next few days trying to settle in to regular life. Natalie went to school. Noah stayed with me and played and napped and learned things. Sally ate and slept, and I had started to do some hair for family and friends.

On about our 4th day home, a relative my age came over for some highlights. She is well known for the liberties SHE takes in sharing her opinions on other people's lives with little regard for the FEELINGS of others or what is or is not appropriate to say. As I was foiling her hair, she looked at Sally laying in her bouncy seat. "LOOK at her neck, SARAH!" she shouted at me. "Yeah. She's still putting back on the weight that she lost. She's still skinny" I replied. "NO Sarah!" she went on "That's what MY daughter looked like when she had RSV! My husband is a nurse. Look at when she breathes!" She pointed at my baby. "There is just no way......" I thought. "She just left the hospital. Please don't speak such an awful illness over the baby of mine that just got out of danger...." I spoke to this woman - all in my head. I finished her hair and then got ready for a date with Sally's dad that evening. I kept watching Sally though. Something was definitely a little off, but, because of her low weight at that point, I really could not tell if she was having trouble breathing or if more of her breathing activity showed because of her low weight. 

We took the kids to their grandparents' house for our date, and I told them to just keep an eye on her. If anything looked remotely off, let us know when we got back, but if she seemed to be going into ANY kind of distress to phone us immediately - not to wait - just call us and we would take her straight to the hospital. 

The evening wore on, and we received no phone call interruptions. My mind began to worry though. I resolved in myself that I wasn't going to let my indignation at people speaking to me condescendingly get in the way of this little baby being healthy. When we returned to their house, they gave us the news. "She did okay...the other kids are asleep....she's alright, but she does look like she's struggling." "Okay" I said and looked at Sally's dad "We are going to the ER right now. I'm not gonna mess around with this. We're going". I turned to his parents and asked "Can the kids stay with you?" They answered affirmatively. Then I gave them strict instructions. For Sally's first stay, we appealed to everyone on Facebook and in churches across the country. Sally's grandfather even stood behind his own pulpit asking for prayer for her. This time, however, I felt the need for privacy. I told them they were not allowed to announce this at church or anywhere publicly. They could ask a few people to pray but to even instruct those people to keep their mouths shut. I wanted us to be able to focus on Sally's care and recovery without the unwanted advice from people like the woman mentioned above. They agreed and we loaded Sally up and went to the ER 30 minutes away. 

When we got there, I seem to remember carrying Sally in my arms - no carseat. I wanted to hold her. I wanted to walk in and them sense my urgency and just take her straight out of my arms to be evaluated. I walked up to the window "I think my baby has RSV, and she left the hospital in Pensacola for 'failure to thrive' four days ago." The nurse handed me a clipboard.....clearly I wasn't getting through. I was beginning to feel a little frantic worrying that Sally would go into some kind of respitory arrest or worse, but all we could do was wait.

Eventually they called us back, and after quick examination the medical personnel confirmed that she presented as a case of RSV. This confirmation was quickly followed by a chest x-ray. Sally had to be held up in a strange sort of bicycle seat/head vice apparatus. They snapped the needed images, and I asked to see what they had found. 

I have always been a researcher. I learned very early in my life that having the most information as possible when something crosses your path is the easiest way to navigate through it, so during Sally's hospital stay the week before, I kept to the same idea. Every time someone would utter a medical term, I would look it up and read as many articles as I could. Apparently I informed myself so well that multiple physicians either asked me "Are you a nurse" or even "Where are you a nurse". When I would inform them that I was actually an out of work hair dresser, their eyebrows would raise. But when your baby is sick, you research. When she got RSV, I was ready and waiting to resume my research, so I asked to see the images from the x-ray. Sally's lungs looked like a sky full of an angry storm......Sally was, once again....in danger.

The hospital in Miramar Beach does not have inpatient accomodations beyond the birthing hospital where I'd had her just a month prior. It is a satellite of the hospital in Pensacola, so we got the news we'd been expecting. We were headed back to Pensacola for her to be treated. There was one ambulance that ran the route from Miramar Beach to Pensacola. That ambulance was going the wrong direction for Sally's first illness - hence her doctor instructing me to drive myself. This time, though, that ambulance just happened to be in Miramar Beach, and the gurney inside had Sally's name on it. She was loaded into the back, and I took the passenger's seat in the cab while her dad drove behind us.

They did not turn on the sirens for our hour and a half ride. This was strange to me, but I had to trust their judgement. The EMT's in the back were watching over her very carefully, so I just sat in the seat and watched the street lights slip past my line of sight one by one. They began to glow even brighter as the tears welled up in my eyes like shining sentinals saluting us on our journey each one granting us passage past its own post until we reached our destination. 

Sally's arrival for stay number 2 is a little blurry to me. I remember very little except that I felt funny wearing heels and "date clothes" in the PICU with my baby so sick. Seemed sort of irreverent to me.

We weren't there very long before the attending nurse came in to check on us.....guess who it was. The smiley nurse. Sally had just so happened to be admitted on another night when this nurse was on duty. I immediately breathed a sigh of relief when I saw her. Something in me knew that, if she was the one watching over Sally, Sally would be just fine. 

Because Sally had a virus that could be deadly for the other babies in the unit, upon entering we had to scrub up, put on a paper gown from a drawer that was outside her room door and then disrobe from the paper jacket and scrub up upon every exit. We were also strongly discouraged from touching Sally with ungloved hands. This was especially difficult for me and was not a rule that I followed all the time. I would always wear the robe and scrub on my entry and exit, but I found myself sneaking off those rubber gloves so I could touch my baby's little cheek or hold her hand while I spoke to her. I just wanted her to feel me touching her. She was once again hooked up to so many wires and even back on a feeding tube for a time. I couldn't help but realize that this was going to set her back from all the work that they'd done to help her in the previous week. I couldn't help but worry that my already weak baby was going to succumb to the ravages of this virus. So I just stared at her, and I sneaked little touches, and I talked to her.

It took another 4 days for her to show signs of recovery and reestablish consistency with her feedings, but with the tender care of our special nurse and rounds of antibiotics, breathing treatments, and everything else, we were given the go ahead to take her home again. 

This time I didn't feel quite so relieved to take her home. I stayed worried. My tiny baby was further weakened, and despite the reassurances from the hospital staff, I was going to be watching her like a hawk. I was going to make sure nothing else went wrong. I wanted to make sure we got to keep this little lady.

This vigilance ended up being to Sally's advantage because there was more coming down the pike for her.......stay number 2 was not going to be her last.