Mama Bear Fights Back

The beginning of this week was quite eventful for us, to say the least. In the 24 hours from Monday afternoon to Tuesday afternoon, I went from feeling as though I had failed Brooke to discovering my inner Mama Bear will fight back at all costs.

For some time now, I have had many misgivings about Brooke's GI doctor. His personality and mine never meshed, and I left every appointment with him feeling as though I was an awful parent and should question my mamma instincts for Brooke. Monday afternoon we were scheduled for a weight check to monitor her weight gain on her new Blenderized Diet, and I had intentions of asking to switch to a different GI doctor that day. My stress levels are high enough, and I recognized that our incompatible personalities and viewpoints on medicine were causing me undue worry!

The appointment was only to see the nurse on Monday, and we were taken to the weight check room for measuring. I told the nurse, one whom we had never seen before, that I had not received the official weight and height measured at her appointment two weeks prior and asked her to tell me what they were before we began. She did so and offered to write the measurements from her appointment two weeks prior, and two months prior, in addition to today's weight for my records. I thanked her and proceeded to get Brooke down to her diaper for the weight check while the nurse wrote things down for me.

As soon as Brooke was ready, we placed her on the electronic scale. Once the numbers stabilized the nurse went to do her calculations and I took Brooke off the scale to run around. The nurse announced that her weight was 21.6 pounds. I asked if she was sure, and can we weigh her again, because that number was much lower than the 22.6 pounds she had weighed two weeks prior. In this moment I look at the scale and notice that some numbers are appearing on the scale, despite nothing being on it, and there is a cloth underneath it to level it- I assume this is some sort of calibration and say nothing.

We plop Brooke back on the scale, and sure enough, it reads 21.6 pounds again. I flabbergasted. The two weeks since our last appointment, I had increased Brooke's protein, fat, and calories, to match the amount she would have gotten on manufactured formula and for a 1200 calorie, per the dietician's recommendation. I had OBSESSED (as previously mentioned) on making sure she gained weight. That weight devastated me. I was beside myself.

The nurse escorted Brooke and I to a private room, to weight while the GI doctor reviewed the numbers. A while later, another nurse came in to the room to tell me his recommendations. She pulled our Brooke's growth chart and showed me how she was "plummeting" off the growth chart, and that the doctor wanted me to immediately put her on a hypoallergenic formula, and surely she has some sort of absorption issue. I was bawling my eyes. Told the nurse that is just didn't make sense to me- she was THRIVING by all other means on the whole foods diet I blended for her. I was reassured that I was a good mother and of course doing my best for her. But, I needed to change Brooke's diet immediately, because she's not absorbing the whole foods.

It did not make sense. She had gained on a "whole foods" formula, but not my homemade whole foods that I have painstakingly made and measured for her?

I left the office without asking for a new GI doctor. I felt stuck. Tearfully, I called my husband to tell him the news. He was as confused as I was. The child that runs around our house all day, and refuses to nap, or sleep, surely could not be failing to thrive again?

Must of the rest of the afternoon I spent crying and panicking about what to do. Thankfully, I had an evening work meeting to distract me, and I gladly left for it to take my mind off of how I was failing my child.

While I was out, Griffin texted me that he decided to weigh Brooke after her bath. We had been doing regular weight checks every other day for the previous two weeks and she had consistently been at 22.8-23.0 pounds. Her weight that night? 23.8 pounds, completely naked. How could our scale be over two pounds off from the GI scale and show a weight gain, when they showed a weight loss?

The following morning, I called my husband before feeding Brooke breakfast telling him I wasn't sure what to feed her. I didn't like the hypoallergenic formula that they had given us, as it was over 50% corn syrup solids, contained cancer-causing Phenyluekotronics, and was a chemically-derived mess. The polar opposite of what I had been feeding her for six weeks. Griffin stopped my tirade, and told me to "make a blend and feed that to her, she doesn't need that formula, I don't believe that she's lost weight. Make a blend." So, I hung up the phone and made a simple blend, removing any potential allergen, and using minimal ingredients.

I then called the pediatrician and begged for a weight check that day, so we could have a third scale verify which scale was correct. The were happy to get us in, and we went later that afternoon.

Upon entering the weight check room at the pediatrician, I explained to the nurse what was going on and told her that I just needed to know the truth. She expressed her sympathy to my frustration and said we should weigh Brooke on the old-school weighted scale, as it is more accurate (who knew?!). Sure enough, Brooke was 23.4 pounds!! For good measure, we took her to the electronic scale, and that read 22.8 pounds. She recorded the 23.4 pounds in Brooke's chart and told me to let the GI doctor know it was there to see.

I was ecstatic! My momma bear instincts were spot on, and my daughter was thriving on the foods I was feeding her!

After coming home, I called the GI doctors office and firmly, but politely, told them that their scale was wrong and needed to be calibrated, that Brooke was gaining not losing, and that I would prefer a new GI doctor. The voicemail I received in return for the GI nurses was very apologetic and they indicated they were happy to switch Brooke's care to the doctor I requested if we preferred that.

Moral of the story is that I learned a lot about my inner Momma Bear, and that the truth I learned in the NICU with Brooke about always looking at the baby and not the monitor (ie numbers) still holds true. She is a happy, vibrant, growing, little girl, and anyone who looks at her can see that.

We don't have room on Brooke's medical team for anyone who refuses to work with us for her continued improvement, looking at the whole picture, or anyone that bullies, talks down to, or attempts scare tactics, over-dramatizations, and other unprofessional behavior. I am very much looking forward to meeting Brooke's new GI doctor next week, hand selected by me for his qualifications- Gastroenterology and Nutrition. Hoping my Mamma Bear senses are right on this one, too.

Surgery is Scary

I find myself easily swept up in the stories of other surgical kids on Facebook and blogs. My heart reaches out to each and every family as I follow their journeys, watching through experienced eyes.

For the past five days I have been following the story unfold of a newborn named Adilynn Jo and her life saving heart surgery that happened a mere 24 or so hours ago. Ms Adi's parents have been posting throughout the day about her recovery, and I'm immediately taken back to those early weeks of Brooke's life. 

There is a numbness that overtakes you as the hours tick by before, during, and after a major surgery for your child. A black cloud of fear looms just overhead, knowing that the worst case scenario is out there... the numbness shields you from focusing on it too much. No matter the numbness, there are still tears, still panic, and a heavy amount of silent praying. Even when you had no religion before, you suddenly find yourself praying.

Brooke's last big surgery took place on December 31st, 2011, and it lasted over 8 hours. I don't remember much, only snippets of finding out they still could not correct her condition, and all of the explanations from the doctors of what the next year would hold for us. 

I was recovering from my c-section still, pumping breast milk around the clock, and beyond exhausted from everything that had happened. There is so much guilt in my heart that I left her alone in that hospital room while she recovered, though I know she never woke up, as she was so heavily medicated. Yet, I can't help but feel guilty that I left her. She was in capable hands, and the nursing team was encouraging of our getting a good nights rest (so important to rest so you stay healthy while your baby is in the NICU!), and we are so fortunate to live only 7 minutes from the hospital.

The long and short of it is that surgery is scary. In that moment, you have no control and you must release all sense of having any say in what happens. It is heart-wrenching to hear from the surgical team what they are going to do to your child. Even though you would rather bury your head in the sand, close your eyes and hope to wake up in a different place, you have to know all of these details. And you have to allow yourself to be numb, while simultaneously feeling a rush of horrifying emotions.

Then you pray. And find a god you may have never believed in before. Because, surely, some higher power has got to help you and (most importantly) your child, get through this.

Calories, calories, calories: The Tube Feeder Obsession

As the parent of a 100% g-tube fed child, my obsession with counting calories is borderline neurotic. Her doctors, surgeons, specialists, nurses, medical supply company, and anyone else who has ever been a part of her care, has trained us to obsess about calories.

It's exhausting.

What I really want to know is how many calories am I burning each day just trying to calculate her calories at every meal?? (I joke... But, seriously...)

Having a complex medical kid requires a level of calorie calculations that is not even on the radar for parents of normal kids. For the first four months of Brooke's life she was on continuous feeds, meaning that 24 hours a day, food was being pumped in to her feeding tube. The machine for her feeding tube is set at a specific speed and dose amount (like medicine), and you simply hit run, and viola, you're tube kid is being fed. And for four months that machine ran non-stop.

It's strange. And even though using the machine sounds horribly convenient and efficient... Trust me on this one, it's not. Though, when it comes to tube feeding, the pump system is by far the easiest, I some respects.

When Brooke started to struggle with retching after every meal, around 7 months old, we started to experiment with syringe feeding, and then settled for a long while on gravity tube feeding. 

Gravity tube feeding = not efficient. However, at the time it seemed to help her feel more comfortable at meal times, so we stuck with it. So glad we've abandoned gravity feeding for the pump system and syringe feeding again.

Anyway, tube feeding requires a crazy amount of calorie obsession for us. Since Brooke is not able to get calories by eating by mouth (it comes out of her spit fistula, on the side of her neck), and because she never really learned how to tell hunger and full feelings from being on continuous feeds, and then strictly scheduled feeds, coupled with NOT eating by mouth, we have to count every calorie, every ounce, every drop to make sure she's getting enough. 

Throw in the mix that Brooke struggled with weight gain for about five months as a result of complications from long term tube feeding (the post-meal retching mentioned earlier), her entire medical team is constantly grilling us on how much we are feeding her.

(Didn't you hate test day? Like right before a big final? The stress, the late night studying, the checking and rechecking that you memorized each test item and topic covered that semester? Yeah... That's how I feel before every single doctor appointment for Brooke. And afterwards? I feel like I failed miserably and forgot to answer all the questions, and left important pieces of information out of the essay question.)

So, we've kind of hit a snag in the growth department again. Just over a month ago, I switched Brooke from formula to a blenderized diet (meaning I take regular food that normal people eat and purée it so it will easily pass through her feeding tube). The blenderized diet (BD) has done AMAZING things for her- all of the retching that medicine and formulas couldn't fix went completely away (woohoo!!), her intolerance of volumes of food greater than 4 or 5 ounces went completely away also, and now that her tummy feels better she has really taken off on learning to eat by mouth. BD makes me want to do the happy dance over and over again!

But, in my learning curve to calculating calories and ounces for BD... She lost some weight. At least a pound. She has since gained that pound back, but it puts her back up to the same weight she was two months ago when we last met with her GI doctor. Which means when we saw him last week, he was very upset with me changing her diet (without telling him... But I had Brooke's pediatrician on board and got her nutritionist involved to help monitor the calories).

Sigh. This is the life of a complex medical kid. Every victory is overshadowed by some other complication. So, now I'm obsessing about calories even more than I had been. And weighing her every other day.... And in the past week her weight has not changed. My anxiety level has climbed to a 20 out of 10, and I just can't figure out why when I measure her calories so carefully she's not gaining faster!

Her GI doc seems to think we should be able to gain 3 pounds in the next few weeks.... Because she did it once before, so it's totally normal, right?!?!?

Ok, I exaggerate... Maybe. But, still, if I could get at least an ounce or two ticked up on the scale, then I might be able to sleep at night. 

EAT(ef): The Journey

 

When we are all born, our first instinct is to Eat. Rooting for our Mother's breast, finding comfort in the suckle and sweet taste of our first food. We are all born knowing, wanting, and able to eat.

Of course, this blog wouldn't exist if that were our story.

My beautiful daughter, Brooke, was born with a congenital defect called Esophageal Atresia Trachea Esophageal Fistula (EATEF). Simple terms? Her esophagus was in two pieces. She has the latter form of this defect, Trachea Esophageal Fistula (TEF, Type C), and in the womb her esophagus grew to attach itself to her trachea.

There was no rooting at the breast when she was born. No eating. No suckling. No comfort of her mother's skin.

Several surgeries within the first few weeks of her life failed to correct the long gap between the two portions of her esophagus. After a failed procedure to lengthen the parts of her esophagus failed, her surgical team ultimately decided it was best for her to grow bigger before attempting a final corrective surgery.

Brooke was given a spit fistula (cervical esophagastomy), a feeding tube, and instructions to get "big" for surgery.

As of this post, she is 20 months old, and still awaiting her corrective surgery. A date is scheduled for two days before her 2nd birthday, this coming December.

Life with a surgical kid, a special needs kids, and kid who has NO IDEA how to eat is a roller coaster ride. This blog is our journey.

I hope you'll enjoy the ride- including the ups and downs- with me.

-Jes