Friday, October 29, 2010

Trying To Stay Positive...

Well, our visit to Children's Memorial was a big disappointment. Our GI doctor told us we would be seen by a bunch of different doctors and that we would leave with a diagnosis. Juliana was seen by a speech therapist, physical therapist, occupational therapist, 3 GI doctors, & an attending doctor. The 3 therapists all agreed with the reports that I brought along from our current therapists (shocker). The 3 GI doctors came up with the idea of doing an upper GI test and a 72 hour calorie count, despite the fact that Ryan and I both mentioned that Juliana was not eating in the hospital (one doctor said, "oh, she will eat when she gets hungry" to which Ryan replied, "you're funny"- I think we know our daughter). The 72 hour calorie count was sprung on us on at the end of the first day by our nurse. Ryan and I discussed it and agreed that this was a terrible idea, and if they really wanted to do a 72 hour calorie count we were more than capable of doing it at home and we didn't need to waste our time in a hospital to do that. They had us weighing Juliana's food before she ate and after she ate and recording it. In the hospital it took longer to do the weighing than it did for her to eat.

The first night we were terribly disappointed and discouraged. Both of Juliana's speech therapists called to check on us, which was very nice. When Ryan left to go home, I sat on my "bed" and watched Juliana sleep in her baby jail/crib. I pulled out my journal and I just let my anger at the whole situation and God flow into it. I sent out a couple desperation emails for help putting it into perspective. I put on my iPod and let my music flow into my brain and I began to calm down. It was a rough night. I got about 3 hours of sleep. It's hard when you share a small room with another person, and besides Juliana there was a 2.5 month old baby and her mom in our room. Down the hall another baby screamed for about 2 hours during the night- that was rough to listen to when there's nothing you can do to help.

(Baby Jail- imagine the rails all the way up past Ryan's head)

The next day Juliana decided to start the day at 4 AM. Ryan showed up in the morning and we decided that if the doctor's still only had the calorie count idea we were going to go home. When we finally spoke with the doctor's, I demanded to go home. The doctor's were a bit taken aback that we did not want to stay in the hospital for the calorie count. I explained as calmly as I could that Ryan was a food scientist and that we were more than capable of monitoring Juliana's food intake at home as we had done it the first year of her life. I then produced her chart and graph that Ryan had printed out of all her eating for the first year of her life. I pointed out that since she had been in the hospital her weight had gone down because she wasn't eating. We asked if we could get the GI study done that day- we were unable to do that, because the hospital didn't have the radioactive isotope that she needed to swallow (you would think they would have had that ready since they knew we were coming in). They spoke to our GI doctor who agreed that we could go home and the discharge process began.

Through out all of this, I struggled to find the positive. Here is what I have found.

1) Juliana did not need to get a G-tube (the threat is still there, but for now it is off the table).

2) The floor we were on had a play room, and if it wasn't for the play room we would have gone insane with a very mobile toddler.

3) The nurses were amazing. They did everything to accomodate Juliana.

4) Every day from 10-11:30 they have a 0-3 year old play group where you drop off your toddler to play with volunteers so that you have a break. This allowed us to speak with the doctors and make our case to go home. Juliana played so hard that she fell asleep.

5) There are volunteers who come around with a cart of books and toys that they bring your child to play with in their room.

6) My child is okay. She may not be growing or "thriving" but I saw children who were in bad shape. I know that in order to grow & thrive & develop you need to eat and desire to eat, and this is a big deal (believe me I know), but Juliana is able to do things that she probably shouldn't be able to do given her daily caloric intake.

While I am still angry about how the visit went and that we weren't sent home with a diagnosis and didn't see all the specialists we were told we were going to see, I try to focus on the positives because I don't want to be angry & disappointed all the time.


  1. I'm so sorry that they were unprepared for Juliana. That is just poor on their part and Dr. Fishbein. What I saw that was good was the therapist swallowing thing, that she had actually gained weight and that it was determined that she is not malnourished!! We can be thankful for those things, plus she is sooooo cute! Love,dad

  2. I am angry and disappointed too...I wish I was the lady holding her while she is sleeping...We don't know what the future holds, but we know who holds the future. Love MOM

  3. I told Jaime that we could go beat them up for you....she was ready to go. So sorry that the trip was a disappointment (especially b/c of the stress you felt in preparing for the visit). Wish they would have prepared more. Juliana looks great(I don't think I've seen a recent pic of her)! She's a cutie pie....and look @ her sweet rosy cheeks....she looks pretty healthy to me(and well loved & cared for).

  4. I was so happy to hear she wasn't malnourished--not sure how that is possible considering she doesn't eat--so that's good news. We were all very disappointed for you guys too.

  5. Yeah, that is definitely hard to hear, it is dissapointing, but I am glad that you are able to look at the positives of this experience. Juliana is one strong girl to be able to be so active yet she doesnt eat as much. She is such a cutie! Hopefully this new hospital she will be going to will actually be prepared for her.