24 hours

The days are long, but the years are short. One of my friends aptly described parenting small children this way, and I couldn't agree more. This past week we had one of those long days, the kind that drags on foreeeveeer and all you can do is pass the time by watching the clock and getting through the next 20 minutes and counting down until it's over. We had to spend 24 hours confined in a tiny hospital room with an active toddler, chasing her every step holding the black box that was attached to her through a tube down her nose. Let me tell you, the parenting books certainly don't have a chapter to prepare you for this.

Caroline and I went back to Baton Rouge for my brother's high school graduation, and then we stayed a few extra days to meet with her GI and do all the medical tests he ordered. She had not improved at all since we saw him at the end of April...in fact, she's been doing worse.  In addition to refusing table food, she suddenly started refusing pureed baby food as well. Her formula consumption dropped to 15-22 ounces per day. As a result, she's been losing weight and sliding backwards down the growth scale. In her first few months of life she was comfortably in the mid-60th percentile for weight. By November she had slid down to the mid-30the percentile. Now she's dropped down to the 16th percentile. If she keeps this up she will fall completely off the growth chart and be classified as 'failure to thrive', which her doctor is hoping to avoid by aggressively seeking answers through all the medical tests. He ordered a gastric emptying scan, another endoscopy like we had in December, and the 24-hour PH probe. We needed to know how bad her gastroparesis and reflux are in order to decide the best treatment approach.

The gastric scan was first, on Monday at 8 am. She was not allowed to eat anything 4 hours prior to the test, which was particularly problematic. She had refused to eat her dinner bottle Sunday night, and we tried to wake her up at 2 am to take a bottle but she refused that too. So by Monday morning she had effectively not eaten anything since Sunday afternoon at 2:45...poor girl was starving when she woke up at 7. We did our best to distract her while we waited for the test to begin. Finally at 8:30 the nurse brought us her bottle with some radioactive dye mixed in, and she happily gulped it down. After that she was content and complied with the the rest of the test, which consisted of taking one-minute xrays of her stomach every 30 minutes. We could see the radioactive material on the screen and knew throughout the test that her stomach was not emptying at a normal rate, but we didn't know the exact amount. They told us the results would be available by the end of the week.

After the gastric scan we met with her GI and explained everything that's been going on lately. She was originally supposed to be admitted to the hospital from Monday afternoon through Tuesday afternoon, but the dr decided to change the plan a bit and admitted her on Tuesday afternoon so that he could do the additional endoscopy. We arrived at the hospital on Tuesday at 10 am in preparation for her 12pm procedure. Once again, she was such a magnificent little trooper. She charmed every doctor and nurse she met, despite the fact that she was again fasting and pretty hungry. She didn't even cry when the nurse took her out of my arms and carried her back to start anesthesia and begin the procedure. She was only out for about 30 minutes, during which her GI did the scope and looked around inside her and placed the PH probe tube into her esophagus. But she was quite unhappy when she woke up from anesthesia, disoriented and surrounded by strangers in an unfamiliar place. She was crying crying crying when walked back to the post-op room...she wanted her mommy and daddy! She calmed down a bit when we held her, but she was still pretty unhappy for the next hour. Who wouldn't be with a large IV in your arm and a tube coming out of your nose taped to your face?

They placed the pH probe at noon on Tuesday, which meant we were hospital prisoners until noon on Wednesday. With the help of an abundance of visits from family members, we managed to play 'pass the baby' (which was more like 'chase the baby carrying the box') and keep her occupied for the longest 24 hours I think I've ever endured. She of course kept trying to pull the tube off her face, so she had to wear velcro mittens on her hands. This totally eliminated her ability to read books, play with toys, etc. so we compromised and removed one mitten and left the other one on to cover the IV so she couldn't pull that out. We otherwise tried to make her as comfortable as possible...put her in her own comfy clothes instead of the hospital gown, socks with grippers so she could run around the room and down the hospital hall. 

After settling in we started counting down the hours by passing the time in 20 minute increments. We pretty much just rotated between strolling in the stroller, playing in the hospital playroom, letting her walk/run up and down the hall, and watching movies or playing on the ipad. The hardest part of the entire ordeal was definitely trying to get her to go to sleep that night. We started the process at about 8:30 pm and it took a good 2 hours to finally get her to sleep. We tried everything we could think of...rocking her in the rocking chair, holding her upright in our arms in the armchair, even me climbing into her crib and laying down with her. There were just so many distractions, it was hard to get her to even THINK about being still. Finally she passed out at 10:30 with me next to her in the crib rubbing her head. I threw a pillow at Bill and woke him up to let me out of the crib, and I attempted to sleep in the armchair. HA. Between the blazing inferno/freezing icebox fluctuations of the thermostat and the nurses coming in every 4 hours to check her vitals, I certainly didn't get much sleep. Caroline however did fairly well despite all the midnight poking and prodding, and she managed to sleep until about 6 am the next morning.

The next morning was more of the same....lots of coffee and counting down the minutes until we were discharged. When the long-awaited moment finally arrived we were disappointed by some discouraging news. The discharge nurse told us they had 'technical difficulties' downloading the data off the black box, and the box would have to be shipped back to the manufacturer in an attempt to retrieve the data. In my mind I was bracing myself for the fact that the data might be entirely lost and we could possibly have to do the whole thing all over again. Not what I wanted to hear after a long sleepless 24 hours in the hospital with a baby. But I just sighed and tried to take it one day at a time...we'll cross that bridge if/when we get there.

Luckily the other 2 test results were fairly quick and we got a phone call from her GI on Friday to discuss the findings. The gastric scan results were consistent with moderate to severe gastroparesis. Her stomach is emptying about half as fast as it should be. For example, a normal baby's stomach should be approximately 50% empty an hour after eating a bottle. In Caroline, after an hour and a half her stomach was only 25% empty. This confirms our suspicions of gastroparesis and explains why she's NEVER hungry and never is eager to eat. In light of these results, her GI has ruled out the hernia repair surgery....she runs a very high risk for complications from the surgery. He also has decided to switch her to a different medicine to try to get her stomach to empty faster. I'm not very excited about this new medicine (Reglan) because it does carry a small risk of neurological side effects, although the doctor assured me it's only about a 5% risk and if they show up we can stop the medicine and the effects will not be permanent. The endoscopy biopsy results showed evidence of inflammation in her esophagus, which means her reflux meds are not doing their job well and the acid is irritating her esophagus. This further explains why she won't eat....it hurts to swallow! The dr is doubling her dosage of Prevacid in attempt to get the acid under control. If it works it will still take several weeks for the inflammation to heal. This is our game plan for the next few weeks and we will need to follow up with the doctor in about a month.

We are so grateful to everyone that came up to visit and help out during Caroline's hospital stay. My cousin Maggie works at the hospital so she came up to Caroline's room to visit and play quite often, which was a huge help! Maggie is trained as a child life specialist for hospitals, so she knew exactly how to comfort Caroline and distract her and keep her happy. Hip hip hooray for Aunt Maggie!

Caroline also received visits from Aunt Fran, Aunty Em, and Mama. Aunty Em brought her service dog Kline to the hospital to visit, which would have been a huge hit and day brightener for Caroline except that she was napping when Kline stopped by! Regardless, she was happy to see each of her visitors and Bill and I were happy to have another way to pass the time.

And of course my mom (Nana) was there for a large part of the hospital visit. Nana graciously indulged our every whim during this visit in an attempt to make us all comfortable, from letting us borrow her car to cooking or picking up dinner to rubbing Caroline's head when she had trouble sleeping. Great big thank you to Nana!

Let's hope that the new medicines are as miraculous as the one we tried last January and that this girl starts to pack on the pounds. We'll keep you updated!