Tuesday was Kate’s hospital procedure. I wasn’t looking forward to my tiny little girl being put under anesthesia but I was looking forward to getting some answers. Kate was scheduled for an endoscopy by her gastroenterologist and a ton of blood work ordered by both her gastroenterologist doctor and her endocrinologist doctor.

I was instructed not to let Kate have any food after midnight as her procedure would be at 8am and it was best if she had not eaten for about 8 hours prior. Kate went to bed at 8:30 and I tried as hard as I could to get her to stay up later so I could pump her full of breast milk here and t here but she had enough of awake time and her little body demanded sleep.

She woke up around 4:30am hungry, and normally by then I would get up with her since 8:30-4:30 is 8 hours and that is a long time for a breastfed child to not eat. But I could only avoid her at all costs. If she saw me or heard me, the tantrums would start. The look in her eyes would say, “I am hungry! Why are you not feeding me??!”

We left for the hospital as we were to be there by 7am. We were there by about 6:40 and Kate was beyond cranky. Luckily, I thought, we would only have to deal with this for another hour and then she would be under and not feel the pain of hunger or thirst. It felt inhumane, denying my child something so basic as food & drink when they not only NEED it to survive, but Kate’s tiny and needs every calorie she can get her hands on that agrees with her system.

7 came and went as did 8. The receptionist had crossed off our names but claimed he didn’t see us. Um, what? I looked at the sign in sheet and it said I was there and it had been crossed off. What the heck? “I know there is not much you can do but it has been way too long since she has eaten and she is really hungry…” I said, frustrated to hear my 17 month old cry with frustration. Even a year and a half later, I grow incredibly agitated and frustrated when my child cries and I cannot soothe her. It’s motherly instinct, you know. You hear the cries of your child and you want to soothe them. You NEED to soothe them and anyone that stands in the way — so help them, God!

We were finally called back to registration, and then the waiting room where Kate was put into her hospital gown and overly large socks. Now, keep in mind that this was a pediatric doctor and she was at the hospital that had the Disney Pavillion! Now why on earth are they not prepared to have baby-sized hospital gear? Is this common?

But, anyway– Kate started perking up when she was being given a lot of attention. The anesthesiologist, Dr. London, was incredibly gentle and kind with Kate. Now, if you know Kate, you know how completely opposite in personality she is from her very outgoing and friendly big sister, Carli. Kate will sit back, observe and you can’t always tell what she’s thinking. She is, though, very animated with her eyes. She gives death stares like no other. Even so, the doctors and nurses found her endearing and adorable and she really liked that. She would shoot a few smiles here and there. It was also nice and reassuring to hear (as a parent) that they were behaving so well. Either they were lying to me (because I could have sworn she was being one nasty toddler) or I expect to much from my children. Either way, I appreciated that they made me feel like no matter how she was behaving, they truly liked her.

Forrest really wanted to go back with Kate. When it comes to our girls and their illnesses, he really steps up as Papa Bear. In fact, he tends to be way more motherly during their illnesses than I am. When he knew Kate was to be put under, he really wanted to be with her. I could sense the tension and the anxiety he had, and she wouldn’t let anyone but me hold her — so we agreed that I would go back with her. We didn’t want any more anxiety than there was.

So, I went back with Kate and held her the entire time. I sat on her bed, cuddled her, and they applied the gas mask. I felt her body grow heavy and she began to relax. Within a minute, she was sleeping heavily. They picked her up and laid her on the bed. It was surreal. I have never seen her sleep so heavily. (She’s not a good sleeper). I left the room and went to join my husband in the waiting room.

The wait was quick. Maybe 20 minutes? It felt like no time at all and they were calling us back to go be with Kate in recovery.

She was still sleeping when we got there. Unlike adults, they weren’t yelling in her ear to wake up. They were quiet and taking her vitals and let us be the ones to wake her up. So, I woke her up with gentle kisses and whispers in her ear and gently rubbing her arm. I woke her up the way I would have wanted to wake up if I was her. It’s terrifying waking up after surgery/procedures when you were put under. I’ve been in that position twice, and the last thing I wanted was for her to be startled and confused.

It took her a few minutes to wake up. She would wake up enough to want me to hold her but she would fall back asleep. It was like that for maybe 20 minutes. The nurses and doctors said that she was waking up “really good!” though, so I wasn’t worried.

The doctor came in and told us that he was sorry but they couldn’t do the bloodwork. The lab had sent adult-sized blood viles and equipment, rather than the pediatric, child-sized and they were unable to get the blood work while she was under. I was visibly upset but kept my cool. The bloodwork I wanted even more than the endoscopy. The bloodwork included metabolic conditions, thyroid, growth hormone levels, etc. My gut has always told me that the bloodwork would have the answers so when he said they couldn’t do it, my heart sank.

Supposedly it was the most mad he has ever been and really took it out on the lab employees. I would never have known as the doctor was soft spoken to us. But, anyway — he told us that there is a sphincter from her esophagus to her stomach that closes after eating and it helps keep the food down. I guess supposedly its not closed as a newborn (hence spit up) but it matures as they get older (around 6 months of age). But hers was completely open. It is like a cup without a lid. When it becomes overly full or agitated, the contents will spill out and that explains her random vomiting episodes after eating. He seems to think that it “explains” her FPIES and “this is it” but I know better.

FPIES doesn’t happen 10-15 minutes after eating. Not usually, anyhow. Kate’s FPIES episodes happen anywhere from 2 hours to 4 hours after ingestion. That is well beyond the normal digestion period. He said this should explain her not wanting to eat and I had to remind him multiple times that her appetite is NOT an issue. She would eat all day if you let her.

By now it was around 10:30 and Kate still had not eaten anything. When I expressed this, he THEN told us that she could have eaten 4 hours prior to her procedure and not 8 — I was mad. As her procedure didn’t happen until about 9:30am, I could have fed her at 5:30 that morning! We would have had a MUCH happier baby, then. It just added to the frustration I was feeling.

Afterwards, we went to the lab to get some bloodwork done. They had a hard time, for some reason, because they were getting it out of an IV rather than the way they normally take blood. But Kate was good the entire time and never showed any discomfort in what they were doing. It didn’t seem that was over, though. They could only get 10mL of blood from her, because she was only 16lbs. (Yes, she actually weighed at 16lbs that morning!!)

But, anyhow — she recovered nicely. She was herself a few hours later and we doted on her and held her and thanked her for being in our life and being such a good sport, regardless of not understanding what was going on.

Unfortunately, I don’t feel like I have any more answers. I had figured as much that she couldn’t hold her stomach contents in as well as others, but her body is just not as advanced as others her age. I did, however, lose confidence in my doctor a bit. He said he wanted to possibly start her on antacids since it was a little red from stomach acid and somehow that will close the hole? I kept asking but he just kept repeating a bunch of nothing. How is antacids going to magically close the stomach?

Plus we really don’t want to pump her body full of medications without fixing the issue. He also said that he would probably not scope her again unless the medication didn’t help. Okay, well the medication would just mask the symptoms of reflux, reflux that doesn’t really happen much anymore. But it’s not going to prevent random vomiting episodes and how is it REALLY going to close the hole. Unless he did scope her again, how would he even know if it closed or not? He wouldn’t.

So that just frustrated us even more.

The only thing I have to look forward to, right now, is the results from part 1 of her blood tests. I hope to God there is TRUE answer in there that we can, without a doubt, believe in.