The Doctor Visit from Hell.

August 19-25, 2013

Based on some of the pictures, it looks like this was a pretty good week but I remember none of it because it was all overshadowed by Friday's doctor visit. I had to wait for over a year to write this post because every time I sat down to write it, I got frustrated again. I tried to write true to my feelings at the time but now have the benefit of hindsight and perspective. 

Caleb pulled the bathtub out from the cupboard and pretended to bathe himself for a while.

Caleb likes to wear his beads from Grandma and Grandpa everywhere. 

One thing I do remember, was that I was really sentimental around this time. About the time Leila came home from the NICU, I began following a blog about Mighty Mathis (my friend's son) who had Spinal Muscular Atrophy, Type I. He had been diagnosed when he was about eight months old and passed away in the beginning of August, just a few months after his diagnosis (I can't remember details of his timeline and they made their blog private so I can't double-check). 

With everything we'd been going through with Leila, there were similarities to Mathis' experience, and I knew things weren't normal with her. As I would read about their family's experiences (often while holding Leila after one of her many choking episodes), I would forget about the inconvenience of not getting much sleep or the fear I felt each time I held my daughter with her blue lips and repeatedly suctioned her nose and mouth to allow her to breathe again (it was usually a weekly occurrence). I was able focus on how blessed I was to have Leila and how blessed I was to be her mother. So, after reading of Mathis' passing, I went to get Leila from her nap and just wanted pictures of her to remember her at this age. 

Laying in her crib after her nap.

Her tiny little hand.

Gnawing on my hand with her gums

Sitting in the chair that she and I spent many hours in together. 

Okay, end of nostalgia.

My hooded boys

I love that my kids love to cuddle with one another. We prop Leila up and he cuddles with her until she tips over.

Already asking to read on the potty!

Beginning of the worst doctor visit of my life. Leila's appointment was downtown at 9 am and Allen was kind enough to accompany the kids and I. I don't know how early we left to get there on time, it was our first downtown doctor's appointment. Our pediatrician strongly recommended we see a GI specialist for Leila because she was gaining weight so slowly and was still labeled with failure to thrive at her three month appointment. We had been unable to get her to take a bottle, which the pediatrician had had us try to add extra calories to. It took us two months to actually get to see the doctor so I assumed it was not that big of a deal. If it was an emergency, they'd get us in as soon as possible. . . so we went. I was thinking we'd see a doctor, he'd say, "she's small but healthy" and we'd be on our way. 

Waiting . . .

If we ever got a fishtank at home, there would be nothing magical about fishtanks when we go to doctors offices or Walmart.

Waiting patiently for her turn to see the doctor.

We got called back, they got her measurements, we talked to the doctor. We gave a brief history. He asked some questions. He talked to his supervisor. They both came in and said, "She needs to be directly admitted to the hospital." WHAT?!!? I was shocked and frustrated. They even said, "She doesn't look like she's failing to thrive but she has lost weight and isn't even on the weight chart." They told us they were going to keep her there for a couple of days to see if they could get her to gain weight through tube-feeding her. Awesome... I called my mom and asked if there was any way she could fly down as soon as possible. She was on the next flight and got here by 5 pm.

While waiting to be admitted, we ate in Memorial Hermann's cafeteria. The GI specialist told me that going off of dairy had no effect on Leila, so I decided that I would go ahead and eat pizza and ice cream. I hadn't had dairy in months! I was skeptical of his advice, but since she was going to be in the hospital anyway, I figured I'd let them see how she responded to my breastmilk when I ate dairy.

After a couple of months without eating any dairy, eating a BlueBell ice cream sandwich never tasted so good! I ate it just how I used to as a kid. 

We were finally admitted, we got to the room, they weighed her and she had not lost weight. They checked another scale, the scales in the GI office were not calibrated. She had gained weight. I was mad! We should not even be here! We're here because their scale was broken. Let me take my baby and go home. Allen left with Caleb because he was so tired.

They told me I could breastfeed her before they began tube feeding, just to see how much milk she was getting. Then before letting me feed her, they shoved a tube down her nose. She was so mad, she wouldn't eat. She kept trying to get it out of her nose and kept gagging. Eventually she cried herself to sleep and I called Allen, frustrated and crying. I started pumping and they gave her breastmilk (tainted with dairy) through the tube. About an hour later, she vomited it everywhere. They weren't sure what was going on. My eating dairy wasn't supposed to affect her . . . so they gave her dairy formula through the tube. Within 45 minutes, she projectile vomited it and started choking on mucousy stuff. They tried again later, with a new nurse because it was after 7 pm shift change. By this time Allen had picked my mom up from the airport, dropped her off with Caleb and came to bring me clothes, toothbrush, computer, etc and stay with me for a couple of hours.

After helping me suction Leila to get her to breathe a couple of times, the nurse called the doctor and got permission to try giving her soy formula at the next feeding. Apparently this was an even worse idea than the dairy. She kept it down for a minute or two before projectile vomiting it everywhere and then got a rash all over her body. The nurse had us try soy for one more feeding. Bad idea.

By the time the doctors made their rounds the next morning, they had no idea what was going on. When you're admitted with a five month old for failure to thrive, most people assume you're an idiot who doesn't feed her child and you're treated that way. So in a way, it was nice for me to see the doctors and nurses be as confused by my daughter as I was. But mostly I was furious. I still felt like my daughter was not failing to thrive, she was just a lightweight. I felt like they put her in the hospital to help her gain weight and all she did was lose weight for 24 hours. I wasn't at home with my sone. They woke me and my daughter up all night to get vitals and make her vomit. And worst of all, it was because their scale was broken!

They had me start breastfeeding her again while they decided what to do. I still had dairy in my system, so she still threw up but not as much as with the formula they were giving her.

My poor baby . . .

The nurses got sick of changing her bedding with each vomiting episode, so they put a couple of blankets down and as each got vomited on, they'd get rid of them.

After my mom brought Caleb to visit on Saturday, the nurses and doctors saw that I was not an incompetent mom and that there must be something wrong with Leila. Instead of just focusing on her weight gain (or lack thereof), they decided to send in a geneticist and occupational therapist after the weekend.

They continued to tube-feed her but changed her formula to Nutramigen. She kept it down no problem. She started gaining weight quickly and they upped the amount of formula, both in concentration and in amount.

One of the hardest parts of being in the hospital was not getting to see Caleb all day! I'd never been away from him for so long. My mom and Allen brought him to visit on Saturday, so I could play with him.

On a seesaw in one of the play areas in the hospital. 

Sunday my mom came to visit me while Allen and Caleb went to church. We talked about how to paint my play room upstairs and the Primary program I needed to write. Mostly, she was just there to keep me from feeling lonely and frustrated.

A bubbly Caleb is the picture I got sent that night at the hospital. I only cried more, missing Caleb, feeling badly for Leila and wishing I was at home with Allen.

Grateful for Grammy

That's the end of this week. Hospital post to be continued . . .

From my letter to Lizzi:
Hey family,

Just wanted to give you a quick update on Leila rather than having you hear through the grapevine... our pediatrician has been concerned about Leila's slow weight gain. She went from 30th percentile to 8th% to 5th% to below 1% without any explicable reason. She referred us to a pediatric GI specialist. The concern is not so much that she is skinny (because she actually looks kind of chunky, for her) but that if she is malnourished while her brain is developing so rapidly is that it can cause irreversible developmental setbacks.

That appointment was on Friday and I haven't been home since... we got directly admitted to the Memorial Hermann Children's Hospital downtown for observation and testing. The diagnosis is "failure to thrive" and things have gone downhill since we've been here. The goal was weight gain and she has lost weight.

They tried tube-feeding her expressed breast milk (since she refuses the bottle) to quantify how much she is actually eating and supplemented formula as well. She threw up everything they gave her for 14 hours (dairy and soy) before they decided to let me breastfeed her during the day and tonight will try a constant drip-feed of a hypoallergenic, dairy-free, soy-free formula through her tube all night.

Problems of vomiting, diarrhea, skin rashes, mucous and choking that we haven't had since she was in the hospital in May have returned... thanks to doctors not believing that she is adversely affected by dairy. Now they are believers even if the blood tests don't confirm she's allergic.

As soon as we heard they were admitting us to the hospital we called Mom and Dad got her on a flight a couple of hours later. She has been here since Friday night taking care of Caleb while Allen juggles time between home and being with Leila and I at the hospital.

We will be here through Monday, maybe longer, depending on tests and stuff. We have been receiving good care and have had the head doctors of pediatrics and pediatric GI for Memorial Hermann checking in on Leila. She has them all stumped. They thought if they gave her more calories she would gain weight. They didn't count on all of these set-backs and are now looking for an explanation, although they did admit what we kind of suspect... she may just be a petite girl. Supposedly we'll be meeting with a nutritionist, occupational therapist and geneticist while we're here. Even if we don't get answers, hopefully we'll at least get enough results to be released soon!