Can we trust the doctors?

Being a mother, a parent, means that it is my responsibility to advocate to the best of my ability for my children until they decide they no longer need me. Being the mother of a special needs child, having specialist appointments, means I have to educate myself and understand why he may need or not. This also means that when I have some serious concerns about how someone is treating me or my child, I need to speak out and trust my gut.

This past week was the stuff of nightmares. Little Bear’s pediatrician requested that I take Little Bear to the pulmonary clinic for them to run some tests with his oxygen levels. The goal was to see if he could get off the oxygen, if not, then try to figure out a more long term plan. We went to see the pulmonologist a week ago Thursday. I wasn’t terribly thrilled with the way the doctor was treating us and he seemed inexperienced with babies as small as Little Bear. We met a second pulmonologist who we would see at the campus for Children’s that was closer to us. I liked the second guy, again, wasn’t thrilled with the first. The first doctor decided he wanted to order a sleep study for Little Bear. While I had my doubts about that, I went with it, especially since he said it would most likely be a month or two before the study would happen. So much for that time frame though, the sleep study clinic called me a day later and had a sleep study set up for Little Bear the following Monday night.

I later was told that the main purpose for the sleep study had been to see if Little Bear had any central sleep apnea or if he could remain stable off the oxygen. Who would have thought such a simple reason would snowball into a massive deal.

Monday arrived and I began to feel a bit uneasy about the sleep study as the evening arrived. I tried to pull together things I would be comfortable with staying overnight in the hospital. I brought along things that would hopefully make Little Bear more comfortable as well. We got to our room and I immediately started feeling uncomfortable. That feeling of discomfort merely increased as I started watching the nurse wire Little Bear up. The more leads she put on, the more I knew the night was not going to go well. I felt a twinge of hope when Little Bear started falling asleep, but as soon as the lights went out and the study officially started, that hope flew away.

Long story short (as I don’t want to relive that nightmare of a night), it was hellish. Little Bear cried, squirmed, and fussed all night long. I could barely feed him due to how much stuff was covering his head and face. I didn’t sleep. Little Bear didn’t sleep. And by the time we got home the next morning at 7am, I wanted to just break down and cry. I didn’t realize how much being back in the hospital overnight would trigger me. Memories and fears that I had felt when Little Bear was in the NICU had come flooding back while I listened to my baby cry with such discomfort and I couldn’t comfort him. My hands and arms kept falling asleep because of standing next to his crib trying to keep his pacifier in so he would maybe be able to to fall asleep.

I knew the nurse wasn’t pleased with what she was seeing on the monitors, but I also knew she wasn’t going to tell me any specifics. She seemed in a hurry to get us out the door the next morning, and when the pulmonologist called me the next morning, I knew why. He asked how I thought the night had gone and after barely acknowledging my answer, launched into telling just how worrisome the results were. He said that Little Bear had a massive number of obstructed breathing incidents, to the point that he was immediately referring us to ear, nose, and throat. He upped the oxygen volume, and started talking about how it wasn’t like we needed to stay up all night to watch Little Bear’s breathing, but he was pretty concerned. I started crying, me, the sleep deprived, triggered mom, hearing yet again something was seriously wrong with her little boy. Only this time, my gut was screaming at me that something wasn’t right about these results. The pulmonologist started back pedaling as I started crying on the phone. He seemed to take back some of his concern, but when I asked how much the extreme abnormality of the night for Little Bear played in to the results, he said he didn’t know. He admitted he didn’t know how Little Bear’s prematurity influenced the results as he didn’t have experience with preemies.

I held my baby, cried, and felt extremely uneasy about the whole sleep study. I watched my baby sleep like a dream that day and night. Once again, Little Bear was showing me that things weren’t as dreary as doctors were telling me they were. The next day, I called back to the pulmonary clinic and asked to speak to the other pulmonologist we had seen the week before. That doctor’s assistant called back I was able to explain my concerns and have some of them validated. The assistant assured me that the ear, nose, and throat specialist would be able to answer most if not all of my questions and she hoped that things would get straightened out when we saw that specialist.

I waited two more days till the appointment with ENT and those days were filled with more uncertainty and uneasiness and hope that the ENT doctor would hear me and my concerns. I got some weird vibes from the nurse who checked us in at the ENT appointment. I mentioned I had some concerns about the sleep study and her reply was a rather brusque “we’ll get to that in a little bit.” I later learned her response was mirroring the doctor’s own frustration with the sleep study results.

The specialist came in and I immediately felt at ease. When I trust my gut about people, it’s almost always right. I felt that this doctor was one of the ones I could trust. She started explaining why she didn’t agree with the sleep study results and how she wanted to try to reverse the snowball effect from the sleep study. She told me that she would be having a conversation with the original pulmonologist as well as the head of the sleep clinic. She was mighty peeved that my comments about the abnormality of Little Bear’s night weren’t even included in the sleep study results. Just then, Little Bear started his usual hiccuping and she asked if he did that often. She watched him for a few minutes and then said that she wanted to give him a prescription for reflux. She was going to do a scope down his nose to see if there was any obstruction but felt like the nasally congestion he’s had since a few days after birth was directly related to and caused by reflux. Even though he does not spit up, he still has a lot of “wet” burps, and hiccups a lot, as well as sometimes acts uncomfortable after eating.

After doing a scope down his nasal cavity and to his voice box, she explained what she had seen. Even with his crying while she did the scope, she didn’t see any obstruction that would suggest obstructive sleep apnea. She couldn’t say 100% for sure that he doesn’t have sleep apnea. But she said that her goal was to start weaning him off oxygen and thought that can happen sooner rather than later. She also told me that I was to come back to her if I ever needed help getting a mess straightened out again.

I walked out of that appointment feeling validated and not feeling as mental as I had the days leading up to Friday’s appointment. I hate to be the mom who’s making the doctors’ lives difficult by always questioning, but golly, those sleep study results and the study itself just did not sit well with me. I would mark┬áthat night as being one of top ten worst nights I’ve ever experienced. I am learning when to shut up and let doctors do their thing and when to seriously question why. I am learning more about my child and his specialties and I am learning to trust my instincts.

So really, it begs the question – can we trust the doctors? I refuse to go back to the original pulmonologist simply because of his current lack of knowledge about my child’s specialties and unwillingness to acknowledge that my concerns are legitimate. I know I’m going to have to deal with other doctors and the same issue of them simply not knowing or possibly believing themselves above my knowledge of my own child. I want doctors who are willing to come alongside Little Bear and I and work with us, instead of above us. I am the “expert” on my child, and if a doctor does not hear me when I voice concerns or questions, then we’re moving on. It’s a fine line to walk; is the decision to question the doctor the best for Little Bear? Doctors are not gods, they are specialists in their fields, but I think it comes down to me to decide when something doesn’t make sense or isn’t something I’m comfortable putting my child through. That fine line includes a fear of making the wrong choice for my child, and yet at the same time trusting my gut and what my child is showing me.

Despite the incredibly rough week emotionally and mentally last week, I feel a lot more relaxed about how things are moving forward from here. After the sleep study and seeing how many wires covered my baby, I’m completely fine having to deal with just the oxygen. As much as I would like that gone, it can stay as long as he needs it and I won’t complain. My Little Bear is telling me he’s okay, so I’m going to trust my baby and rest in that.

Bringing Little Bear Home

“Expect him to be here for 6 weeks,” they told me when he was first born. It was 6 weeks till his original due date, exactly 4 weeks till his scheduled c-section date. Knowing my Little Bear as I do, I expected maybe 4 weeks in the NICU instead of the full 6 weeks.

However, I walked in one day a week and a half after his birth and his nurses told me that they wanted to switch him to something called ad lib feeding. This meant that instead of having him on a strict feeding schedule, they would let him wake up on his own. He would have a minimum of how much milk he had to take, but he could eat as much as he wanted. I told one of my favorite nurses that when she stopped by to say hi. Her response suddenly brought the reality of getting to bring him a lot closer. She was happy yet upset that they were switching him to ad lib feedings. She said that this meant that we probably wouldn’t be there when she came back to work next week! In other words, if he could gain weight and wake himself up to eat at reasonable intervals, then that was a HUGE step towards going home. I already know that otherwise, they were pretty happy with his progress, especially considering he was only a week and a half old.

Two days later, they told me that he was starting to lose weight. This merely meant that they could up the amount of caloric supplement they were putting in his bottles and see if that would make a difference. As that potential discharge day drew closer, I scrambled around at home when I was there, trying to make sure we had everything ready. Little Bear had started developing and had developed an awful diaper rash. Because of the nerve damage, he (I guess, thankfully…for my nerves’ sake) couldn’t feel the rash very much. But, it was getting to the point of broken and badly chapped skin. I wanted to make sure we had a game plan for things to use at home to help protect his butt. The next day (now, February 9th) I was told he had gained back not only everything he had lost but had doubled that! My little chubby bear was suddenly putting on weight and sucking down bottles like there was no tomorrow.

I began checking items off the discharge list. I learned how to cath Little Bear, I took over diaper changes when I was at the NICU, I took over feeding and general care whenever I was with him in person. The next day, Phil’s birthday, we were told that Little Bear had passed his car seat test with flying colors. My Little Bear was flying towards discharge and he wasn’t even two weeks old yet. And they had warned me to expect him to be in the NICU for 6 weeks.

I’m going to dive into the whole emotional side of things in another post, but for now, it was hard preparing for him to come home. Now that I knew he would be coming home, I wanted him home so badly. The exhaustion of driving 30 minutes each way every day to see him was starting to push me down. I wasn’t going to be able to handle making that drive for much longer. Even though I wanted him home, fear of being sent home without a shunt, him being on oxygen still, and just general teeny tiny baby fears started popping up to hover just behind me. The nurses have to tell you what to look forward if your baby starts not being able to breathe. They have to tell you what to look for when your baby’s head suddenly can’t handle the amount of fluid building up. Here’s my champion of a baby, getting ready to head home, but still with so many things I’ll have to watch for, so many things that could go wrong.

Oh, and then add in normal baby things. I’m grateful Little Bear is my second child. AND he is a lot like his older brother was as a baby. Which helps a lot with not freaking out about things that would have concerned me as a first time mom. But still. I felt at times like I was bringing home a ticking time bomb.

Little Bear was discharged with Neurology’s blessing on February 13th, 2017. He was 13 days old, weighing in at 5lbs 5oz and while he was still on oxygen, I knew that he would be okay if he was off oxygen for a little while. Thanks to a test his nurse and I had done the day before, I now knew exactly when he really needed the oxygen and that he did well all other times. That drive home was a little rough. My teeny tiny infant looked like a miniature baby doll in his huge car seat. I sat in the back seat and worried the entire time at every jostle of his head. I wondered if we had everything ready at home and then laughed because I knew whether we did or not, we would know for sure by that evening. We pulled in to home, Little Monkey being at a friend’s house, and walked in the door, the first time Little Bear was home and not in my belly. I sensed an immediate relaxing from Little Bear as I pulled him out of his car seat. He seemed at ease in a way he hadn’t been at the NICU. It would definitely take a few days before things would settle into a sort of new normal routine. But he was home, and in a few short hours, my little family of four was home, in the same place and all together.