Thursday, August 1, 2013

Ella Bella Bo Bella

Guess I took a pretty long blog-vacation, huh? Life has been busy and exhausting and honestly not all that exciting to write about, so I've been doing other super important things. Like watching all the seasons of Dawson's Creek on Netflix. And you know, dishes and laundry and stuff. But, anyway, we're alive and well and so very close to being reunited with the man in our lives, so we are excited about getting this month done so that September can bring him home to us!

I've had a lot of people asking questions about what's going on with Ella, since they've seen me post about her reflux, feeding therapy, I thought it would be easier to write it all out and explain what we've been dealing with for the past few months.

At birth, she was alert, hungry, and impatient for milk. Once my milk came in, we experienced a pretty blissful first couple of weeks, and I was quickly fooled into thinking I had a super easy baby and it was going to be way less difficult to adjust than I thought. But, starting around two weeks, things got complicated. Every late afternoon/evening, when I would try to feed Ella, she would pull away and cry and refuse to eat after a minute or two. It usually lasted for a few hours each day where I couldn't get her to nurse, but throughout the night and daytime until then, she was totally content and a great eater. I was perplexed.
Eventually, it started to affect more and more of her feedings, until we got to a couple of days where she was refusing every feeding and I was fighting to get her to eat a little here and there. It was SO frustrating to not be able to nurse her to comfort her, put her to sleep, I was at a total loss. I suspected reflux, and asked her doctor about trying meds, but he didn't want to put her on anything while she was so young, and he talked me out of that idea.

I got a lactation consultant to work with us and verify that I wasn't missing anything with her latch or my behavior, and she reaffirmed that I was doing everything right, and Ella appeared to have a classic case of silent reflux, which was causing her to associate eating with pain, and therefore refuse to eat. She encouraged me to get her on meds ASAP before the problem got any worse and affected Ella's growth. So, I called the doctor back, told him I definitely wanted the meds, and he agreed and we started on Zantac.

I gave it almost two weeks, and saw no improvement. If anything, she seemed worse in the hours directly after her dose. So I stopped that and asked to try the next option (many babies with refux need to try a few options to find the right one, and the right dose, so I expected that might happen). He offered Prilosec next, and at the same time, I opted to try chiropractic care to see if that might help. We started going 2-3 times per week for adjustments, and after the first two, I started to see improvements. I ended up not starting the new med, and continued with adjustments for several weeks with good results...finally we had some relief.

After a few weeks, her progress plateaued, and her feedings were still a struggle. A friend told me about her experience with her son, and his symptoms sounded SO similar to Ella's. She told me they got evaluated and did therapy for feeding issues, and recommended I get a consult with their former therapist. So, we did, and the evaluation showed that Ella definitely had major reflux going on, had a very strong gag reflex, had a poor coordination of her suck/swallow/breathe pattern, and had a lot of sensory aversion with her mouth/tongue. They recommended we get her on Prevacid and start therapy immediately.

So, that was our next step. We started working on a few things to help her with breastfeeding, and got her on the Prevacid to help control the reflux, and after a few weeks, things improved. It was a process filled with ups and downs...many times she would do great at one session, and awful the next, so we were constantly trying new things and working through new challenges. Slowly, feeding got better and better, and I finally felt like we were being successful.

Her therapist started mentioning solids pretty early in the process, which worried me. I am 100% a believer in waiting until 6 months to start solids, so I was fairly adamant that we hold off until then. At 5 months, Ella was sitting easily without assistance, picking up small objects, turning her head to say no...meeting all the criteria except age. Because we knew it would take a while to get her to be successful with solids, I decided to get started with the process a couple weeks early, and we switched the focus of her sessions to that goal.

Ella very quickly let me know it was going to be harder than I  had imagined to get her to eat. She did her best to refuse any attempt to put food into her mouth, and when I did manage to get a bite inside, she gagged, shuddered, coughed, made faces...definitely made her feelings known. Her therapist gave me tools and strategies, and we practiced, or rather tried, whenever we could. 

At her 6 month well-check (with the third doctor's office we tried, since we had not gotten great support or help from the first two), we met a new doctor who came in the room with a growth chart in her hands and a frown on her face. Her first words to me were "I am very concerned about Ella's growth."
I listened to her concerns, but really wasn't too worried at that point. I knew Ella's weight gain had slowed a lot, but I thought that was fairly reasonable considering what she'd been working through, and the fact that she was super active. I felt that the doctor looked at the growth charts before looking at Ella and assessing her overall health, and that seemed unfair to me. So, I took it in stride and without being overly concerned, decided to just keep an eye on things until her weight check, six weeks from then. I also agreed to make an appointment with a GI specialist, because I figured it couldn't hurt to make sure her reflux was under control.

Shortly after that, things started to regress a bit with breastfeeding. More fussing during feeds, more signs of reflux, worsening sleep habits, and the poop issue. Forgot to mention that part earlier. At some point around 3-4 months, Ella stopped pooping regularly. She went 4 days, then 7, then 10, then 16. I got mixed opinions...some people were horrified and thought that was VERY concerning, while others said for a breastfed baby it can be normal to go...a while. Nobody quite knew when "a while" becomes too long, but everyone had the same conclusion about one thing--when she did poop, it would be a HUGE mess. Except it wasn't. She finally went on day 16, and it was nowhere near the huge mess I was prepared that was odd. But, she went more regularly again after that...for a while.

So, back to 7ish months. Things were getting worse, and poop issues too. I began to get worried that she wasn't pooping because there wasn't any poop--she was holding on to every bit of milk she got because she desperately needed all of it. She made it 17 days this time, and yet again, no huge mess. I also started to notice she was getting thinner and not growing out of clothes or diapers...and I began to be a little worried. The GI specialist hadn't been able to get us scheduled until late August, so I started to get antsy wondering if there was more that could be done in the meantime.

I moved up her weight check with her pediatrician, in hopes that it would put my mind at ease and be no big deal, but it ended up being a bigger deal than expected. In almost 6 weeks, she didn't gain a single ounce. She also barely grew in height or head circumference, bringing her weight and head into less than the 5th percentile, and her height into the 25th, which is concerning since she started in the 90th for that. The lack of weight gain alone wouldn't be terribly concerning if she was growing otherwise, but the overall lack of growth made her doctor a bit more worried. So, they did blood work, tested her urine and stool, asked me a billion questions about everything, and are planning to get a barium swallow study and move her GI appointment up sooner if possible. We left the office with an official label of "failure to thrive". 

The good news is, Ella is meeting milestones like crazy, and appears healthy--bright eyes, healthy skin, big smiles. The bad news, is that she's not getting adequately nourished, and if this continues/worsens, it could affect her neurological development over time. So, we want to get things under control sooner rather than later.

For now, the goals I have, are to focus on upping my milk supply and pushing her to take more breastmilk--by offering more often, feeding without distractions around her, and being more mindful of her behavior during feeds so I can keep her going longer. I'm also going to work harder at offering high-calorie, nutrient-dense solids more frequently, and adding things like olive or coconut oil to boost the calories in other foods. Hopefully we can get the GI appointment to happen soon and rule out any structural abnormalities, and figure out if more measures can be taken to help with her reflux, or anything else they can recommend. We'll also be going for weekly growth checks to monitor her progress.

I'm not super stressed about it...I know she is definitely still "okay" and not in major trouble for now, but I want to be proactive in getting this managed so that we don't slip farther into this problem. Failure to Thrive has a big spectrum of severity--many kids get that label and it doesn't take much at all to get back on track and catch up, others take a lot more work, and for the most severe, it can cause major health and developmental problems and require hospitalization and drastic measures. So I'd rather not get past this early phase!

So, prayers are appreciated as I sift through information and advice and figure out what to do first and all that good stuff. Pray for rest--she's waking up a few times each night to eat, which I can't put a stop to when she needs those calories so much. Pray for wisdom for me, and for her doctors. Pray for time to fly by as we wait for Nathan to get home to walk through this with me!