According to Merriam-Webster, definition 2c of "aspiration" is: the taking of foreign matter into the lungs with the respiratory current. That is the definition we are dealing with this week. It's not Raya though...
|(I propped her up against the door and took her picture in her pretty dress)|
She also was unable to nurse after the first day. She made great efforts for about 24 hours and then never latched on well again, despite numerous attempts. I am still convinced that she had a tongue and lip tie that was preventing her from forming a good latch. I talked to her pediatrician about the loud breathing, inability to latch, and all of the abnormal noises she made while she ate and after she finished eating. Each time we discussed it, he reassured me that as long as she wasn't getting pneumonia, she was okay. I mostly agreed. I knew that if we did do any testing and it showed that she was aspirating, we would be looking at another kid with a feeding tube. Obviously I am eternally grateful for Raya's feeding tube because it has saved her life every day since she was 2 months old, but it is not a road that I wanted to go down a second time. It hurt my heart in a way that I can't put into words to think about doing it again, and I kept pretty quiet about the whole thing. The emotions of having another baby after you've gone through having an undiagnosed chronically ill child are complex and indescribable. Logical or not, I was afraid people were going to think I was being a hypochondriac about Piper and so I really only talked about my concerns with Donny, my sister, and my closest and most trusted medical mama friends. One of them was even kind enough to loan me her pulse oximeter for a while so that I could have peace of mind. I told her ped that I had borrowed a pulse ox and then felt like he probably thought I was a paranoid nut job for doing that. (he probably didn't, but I wouldn't blame him if he did because he had never met me before Piper's 1 week well check)
The pediatrician and I agreed that if things seemed to get worse as time went on or if she got pneumonia, we would do a modified barium swallow study (MBS). Wait and watch. Part of me hated that plan, but I also knew that there was no use jumping into a bunch of testing if we didn't see ill effects from what may or may not have been happening and so we waited.
In some ways, things did get better. She eventually stopped squeaking while she was drinking her bottles and as long as we didn't use anything but a slow flow nipple on a Dr. Brown's bottle, her choking became minimal as well. Piper has done everything at her own pace. She didn't hold her own bottle until she was almost 8 months old. She didn't start crawling on her hands and knees until she was 11 months old. At 15 months, she has taken 2-3 small steps a couple of times but is not walking yet. She has never fallen into the category of being delayed, but she is at the slower end of the curve. (for the record, I'm totally okay with that. babyhood is not a competition.) I tried to advance her to a medium flow nipple but each attempt left her choking and sputtering and sounding wet so we went back to the slow flow. At the age when the Babycenter emails were telling me she should be switching to a sippy cup, we were still very much dependent on slow flow bottles.
Drinking liquids was not the only thing that concerned me about her swallowing. I don't remember when it started, but at some point, she started to occasionally gag and vomit during meals. It always seemed to happen when she was down to a couple bites of food left on her tray. The last Cheerio on the tray would bring her entire meal back up with a vengeance. It started happening once or twice a week and we knew it was directly a result of the way she swallowed, as opposed to a sensory issue, volume tolerance issue, or food allergy issue. (we kind of know what those vomits look like at this point, ya know?)
As her first birthday approached, I was once again fighting a nagging feeling that the swallow issues were not improving enough for me to continue ignoring them. When she got her 3rd croup in a 5 month span, I decided I'd had enough of the waiting for pneumonia. The day of her 1 year well check, she was sick with croup. I asked the pediatrician if 3 croups in 5 months could be evidence of aspiration. He didn't think so. I told him I was ready for him to order a swallow study and he obliged. I don't think either one of us really expected abnormal results.
The MBS almost didn't happen. His office faxed the order over to the clinic I asked him to send it to, where Raya has had all of hers done and that clinic was supposed to call me to schedule the MBS. Their radiology department is notoriously awful at scheduling things and following up with people, so when I hadn't heard from them after a week or two, I called them. I left multiple voice mails and waited for a return call that never came. In the mean time, I was slowly but surely talking myself out of the swallow study. I decided I wouldn't bother with it until we went back for her 15 month well check and that I'd have the doctor re-fax the order then. A couple weeks before that, Raya had a routine follow-up appointment with her GI doctor. We were almost finished and Piper was getting crabby, so I gave her a small drink of water out of my water bottle. She coughed and sputtered and spit water everywhere. Raya's GI looked up from what she was doing and said, "Does she have a swallowing problem?" I explained that I had suspected swallowing problems and we had finally decided to go ahead with a swallow study but that radiology had never returned my phone calls about scheduling after the doctor's office faxed the order over. She went straight out into the hallway and asked one of the ladies at the nurses' station to track down the clinical nurse manager. She came in and got my contact info, Piper's info, and the pediatrician's info and told me she would follow up with me.
Sure enough, the next day, she called me back and said that radiology told her there was no order for Piper's MBS but that she had called the ped's office and they had faxed over another one. We got it scheduled for May 19th. Then I got sick and Piper got sick, so I rescheduled it. (Read: I found out how much we were going to be paying out-of-pocket and wanted to make sure we got an accurate study!) Then she was still sick so I reschedule it again, this time for 2 weeks later. As the new appointment date approached, she still had a very wet-sounding cough. I almost called to reschedule again, but then decided to go through with it since her wet-sounding cough had not improved at all in 3 weeks and was noticeably wetter-sounding every time she drank a bottle.
I was not thinking clearly when I agreed to a 10:15 check-in time for 10:30 MBS on the same day Raya has therapy at 11:00 but by the time I realized that's how it was going to happen, it was too late to do anything about it. Thankfully, we have understanding therapists who happened to have some flexibility that day so we just came a little bit late to therapy.
Poor Piper was not a happy girl. This kid LOVES food. She LOVES her bottle, and you just don't mess with her and her food. She could not understand why nobody would feed her that morning. She had to be NPO for at least 4 hours before the study, and I didn't wake up early enough to wake her up so she could have a bottle before the 4 hour cut-off so she was STARVING by the time we got to the clinic.
The speech therapist who did her study was not one that I had worked with before but she was really nice. She had a graduate student with her and there was also a radiology tech in the room when we went in. They got Raya set up with a portable DVD player in the other room while I got out all the utensils & supplies I had brought for the swallow study. They kind of laughed at how prepared I was (in a nice way, not like they were laughing at me. I think.) but I told them it was not my first rodeo. They were talking about how they'd had a mom in there the day before who was watching the screen and commented about her child aspirating before the radiologist or speech therapist could say anything. Yeah. Been there. They had all the barium ready and we were going over Piper's history while I got her out of the stroller. I told them that fatigue seems to be a factor in how she swallows, and that she seems to swallow more poorly as she goes along, so they agreed that it would be okay for me to feed her a couple ounces of milk before we started the barium. Holy smokes was she ever excited to see that bottle! She grabbed it and sucked it down like she hadn't eaten in a week.
After she'd had her little snack, I strapped her into the special seat and the radiologist came in. I positioned myself so I could see the screen but I didn't have enough hands to video the screen like I wish I could have. In case anyone is not familiar with what the setup is like on a swallow study, here's a picture of Raya during one of hers:
We started with ultra thin barium, which is the consistency of water. She grabbed the bottle out of my hand and started chugging away. She swallowed fine for about 3 or 4 swallows and then I saw the first little bit of barium go down the wrong way. I think I let out an audible groan at that point because I knew it was not good. Before I could even finish saying, "That was an aspiration, wasn't it." she did it again. And again. At least she coughed a couple times. The radiologist was dictating notes to his tech as Piper drank the barium, and I had to fight back tears as I watched her aspirate again and again on the screen. I didn't swear though, which is what I also felt like doing.
They had me take the bottle from her. She did NOT want to give it up! I handed it back to the speech therapist and she dumped it out and poured in the next consistency, which was "half-nectar". I handed the bottle back to Piper and she happily drank it. We watched on the screen as she aspirated the half-nectar consistency about 3 times in a row. She never coughed that time. That means her body was not trying to protect itself by coughing to clear the liquids out of her airway, and that is bad. *more swear words*
Once again, I had to pry the bottle out of her little hands. That child has the most non-discriminating taste buds of anyone I know. The speech therapist switched to nectar consistency and Piper gladly took the bottle back from me. This was the only point during the study that I got nervous. Nectar consistency is not a huge adjustment from not thickening, but honey is. I know there are kids who live off of honey consistency thickened liquids, but I watched the screen feeling like nectar vs honey could be the difference between a kid who continues to drink liquids by mouth and one who needs a tube for liquids. To my great relief, there was a noticeable difference in how she was able to swallow with the nectar thick barium vs the half nectar and ultra thin. It went right where it was supposed to go.
After that, they handed me the cup of pudding thick barium and Piper's spoon. I moved the spoon toward her mouth thinking that she would pull the bottle of barium out of her mouth when she saw it coming but she did not. She just sucked harder on the bottle, like her brain was confused and couldn't get her mouth and hands to do what she wanted them to. I pried the bottle out of her hand while she screamed at me, and then cried her little brokenhearted cry. I fed her a couple of spoonfuls of the barium and she gladly ate them and stopped crying. Thankfully, the pudding thick barium went down great as well, meaning that she is safe to continue eating pureed and mashed food. After that, we moved on to the barium cookie. I gave her a small chunk to eat and she swallowed it pretty well. I gave her another chunk and that kind of pooled in her throat before it went down but none of it went where it wasn't supposed to, so she is safe to continue eating solids as well. She insisted on finishing the last piece of the cookie even though we were done at that point. I have never seen a kid so enthusiastic about drinking barium, nor have I ever seen a kid get so upset about having it taken away! If there is ever a zombie apocalypse and barium is the only edible substance left on Earth, Piper will be okay.
So where does this leave us? It means we are thickening her liquids for 3-4 months to nectar consistency since she is able to swallow that safely, and then we will repeat the swallow study to see if she has improved. How am I taking it? Pretty well, I think. Right after the MBS, I was torn between being sad that she failed it and wanting to shout "I told you so!!" from the rooftops. I'm not crazy!! I was RIGHT, although I certainly did not anticipate Piper's swallow study being worse than Raya's worst one but it was. (ouch, seeing that in writing stings.)
Honestly, I think we have the best case scenario though. Since Piper never nursed, I have been pumping and bottle feeding all this time, so throwing a little thickener into her bottle is no big deal. We don't have to try and convince an exclusively breastfeeding baby to take a bottle of thickened milk or formula, and that would be a MUCH bigger challenge. I may be wrong about this, but I really think that what saved our bacon is the fact that she has been on breastmilk all this time and not formula. I am convinced that if she had been aspirating formula all her life instead of breastmilk, she would have had multiple aspiration pneumonias and probably would have a feeding tube by now. I might be tooting my own horn a little bit but mostly I am just grateful that I am still able to pump and feed her breastmilk at 15 months. I never imagined I'd pump that long but dairy makes her sick and I limit the amount of soy my kids get, so if she wasn't on breastmilk still, I'm not sure what I'd be giving her.
So far, she's handling the change well. I think she was annoyed the first day because it takes her longer to drink her bottle and she kept pulling it out of her mouth and looking at it like, "What the heck is wrong with this thing?!" She's getting used to it though. We just happened to have a few packets of thickener laying around and one of our friends had a couple extra jugs of it that we were able to get, so that will be enough to keep us going for a while. I used to have several boxes of it but I gave it all away, so I was grateful that someone was able to give us some of theirs.
I wouldn't be me if I didn't have some little nagging anxiety in the back of my mind wondering if this dysphagia is just a fluke or if it's a symptom of something bigger. For now, we're just counting our blessings. I have to say that it was SO STINKIN' AWESOME to go in, do a test, have it show a problem, and know what to do to treat the problem. It was a nice change from how testing almost always goes with Raya!
Well, I've rambled on long enough but I felt like sharing a bit more of Piper's story now that there's more to tell. I sure do love this girl!