Let me back track a few weeks when we first got home. Leila pulled out her NG tube during the night and my first instinct when I found her that morning was to put it back in. I was told by many nurses that this would happen a lot. The NG helped get feeds into her tummy when she was still learning to take a bottle. We trialed many feeding styles and ended up with the same result, puke. Leila would throw up damn near every mL from her feed every. time. she. ate. The day she pulled her NG Kyle suggested we try and feed her for one day with a bottle and see how she did with the NG out. To what he expected she did better. We had no instances of puke for a few weeks. We had one time although I hit her gag reflux so I'm not counting that. The NG tube goes down her nose and into her belly. This can cause aversion to eating for some babies. When the tube came out and she was eating better I thought maybe we would be through all of this tubing.
LeiLani wakes up around 7-7:30 every morning after sleeping a full night. I know, it's lovely. I will make her a bottle first thing and she will drink about 2oz and then she'll fall asleep for about 30 minutes. When she wakes up she is clearly hungry still because she cries. She will then eat the rest of her bottle. Some days, she would eat every three-ish hours with the same habit of falling asleep. Other days she would feed on demand. At the time we were released from the hospital Leila was using a preemie nipple on the bottle because while learning to eat the first level was too overwhelming for her. As she began eating better for us we noticed she was working too hard to get the milk out and figured that was why she was falling asleep so we went up a level.
While we were in the hospital Leila was on a schedule for eating. Whether she was ready to eat or not she was fed. I have always believed in feeding on demand as that is what literally every baby I have come across has done. My child is a case I have never experienced. Medical professionals know how to deal with CDH babies and gave many tips and suggestions that they know would work so I listened. LeiLani started her own routine of eating which isn't what the hospital had suggested but she was eating nonetheless.
At the appointment Leila was weighed and they took her measurements. We were taken to a small conference type room where a nutritionist and another therapist met with us. They asked how much Leila was eating each feed. I would explain some days were better than others with schedules and glances to each other were made. "So, how much would you say she's eating in 30 minutes?" "Most of the time it's about 2-3oz." I answered every question they asked, each one more and more pressing on judgement. The looks on their faces when I said she slept through the night is imprinted in my brain forever. Apparently that's not okay. Being in a room with two women who know more than Kyle and I do, pass glances to each other right in front of us and then going "mmm ok" was seriously the worst.
I have felt like LeiLani was doing better. She is intermittently on oxygen, the NG tube was out, she's holding her head up, she's holding her bink in herself most days. All of that was smashed at this appointment. They looked at us like we were the kind of parents that don't dress our kids warm in the winter. Or that we just didn't feed her, which I guess is what it looked like. It's nice to have doctors by our side to teach us what to do with our daughter. It is nice to learn her quirks and be able to provide what she needs. What isn't nice is going somewhere where we are supposed to feel valued, safe and that we are doing what we should be doing. I felt judged and continuously told Kyle I needed to go home. At first, he asked why until he saw my face and then he knew. I was seconds away from being me and we all know how that goes.
A comment was made that was my last straw. Kyle threw his hands in the air and shook his head and I spoke up. Two weeks before this appointment we met with her cardiologist who showed concerns about her left lung because it is underdeveloped. Overall we were cleared and he was the one who wanted intermittent oxygen. The following week we met with LeiLani's Pulmonologist and the first thing when she walked in was to say that LeiLani's lung was collapsing. Wait, what?! She was terrible with explaining things to us even though I asked her to clarify. She just looked at me like I was dumb as rocks. Shortly after that appointment we met with her surgeon and he had nothing but positive things to say about Leila and her healing. He commented on her lung and said he had zero concerns. That made us uncertain if the lung was actually collapsed. When the comment was said from this doctor on Monday she said "lungs are looking great and they're clear". I went off on her. I spoke out that I was concerned she had a collapsed lung and made her pull up the scans. She said nothing about being collapsed just that it was underdeveloped. They didn't know LeiLani had CDH and that she was in their NICU. Right then, I had enough and I couldn't wait to leave. I don't even think I said bye when we left.
We got to the car and I bawled. The first question that popped into my head was "am I even a good mom?" Am I really doing this thing right? Do any of us really know? What defines a "good" mom by societies standards? My input is as follows: if your children have a roof over their heads and food in their bellies you're a good mom. If you teach them right from wrong you're a good mom. If you dress them for the appropriate weather you're a good mom. If you feed them nutritious foods or even McDonalds food you're still a good mom. What works for you is your business. The downfall for us is that we have so many people caring for our child that it makes a tight space for too many different judgement calls. I say, if you have no idea that LeiLani was a CDHer and born at YOUR hospital I don't want you caring for her. I am a good mom. I may not be following to a T everyone's suggestions but Leila is fed. Leila is learning everyday and she is happy. No one will ever make me feel like I am a terrible parent. Now, I will speak up against negative judgement. I think that every mother should do that. Speak up to people who think there is only one way to be a mom. Speak up to people who have an opinion about everything and especially to doctors or therapists who pass judgements with facial expressions and are passive aggressive. I am a bull and I have horns that could kill. I will advocate for my child and I see her progress I don't need any opinions.
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