I was reading through some of my old journal entries yesterday on Eli's babiesonline site (see links on the right side of my blog page under "Eli's site") and decided that I would make my post for today a re-post of my entry exactly one year ago today. It is amazing how some things have changed. How philosophies, attitudes, health status, and life in general has evolved in just 365 days. Are we where I thought we would be right now when I wrote this entry a year ago? I would say no. It has been a rough 15 months, but a wonderful 15 months at the same time. To sum it up, it has been an extension of the NICU rollercoaster drawn out in a 15 month whirlwind of activity and doctor appts. I didn't expect to deal with the ongoing feeding issues, the FTT, the aspiration, the severe GERD, the GJ tube, the Nissen fundoplication, and all of the wonderful things associated with a micropreemie with growth delays and hypertonia. I also didn't expect Eli to excel so quickly after 12 months gross motor wise. If you would have told me a year ago today that Eli would have taken 10 steps today I would have laughed in your face. Yes folks.....you read that right.....our little bit took 10 steps yesterday out of the blue. But I'll save that for another post in it's entirety. For now----the post from exactly one year ago today---September 20th, 2005. Enjoy!
Tuesday, September 20, 2005
Overall the last two days of doctor's appts have been good. I feel like we are going to get some progress soon. Eli shocked me yesterday though when they put him on the scale at Children's Hospital. I would have bet big money that he was at least 6.5lbs. Unfortunately he weighed in at 5lbs 15oz and 19" long. His neonatologist was concerned with his low weight gain (less than half and oz/day). Eli should be gaining a minimum of 1oz/day at this age. His neo said it's most likely related to two problems. 1.) Eli is an extremely active baby and is very strong. He is using most of his calories just being Eli. 2.) Eli's reflux is causing him to avoid eating much. With the Pecid and Reglan he should be doing better so they are considering adding Prilosec too. His neo also scheduled Eli for a barium swallow study on 10-3. They will have him eat a bottle with barium added and take continuous x-rays throughout the feeding and afterwards to see if he has any problems with the coordination of swallowing his food or with aspirating food as well. Depending on the results of this test we will either add a thickener to his milk like Thick-It to make it harder to aspirate with his GERD or possible try some NG/OG feedings until he can get the process of eating down.
Great news on the tight muscle front. Eli's neo said that he looks FABULOUS and that he is ahead developmentally!!! Oh my goodness....this is something we were never supposed to hear with a 25 weeker. They said his legs and hips were a bit tight and to keep doing stretches and baby massage daily. They will keep an eye on it in the coming months but don't think he'll have an CP problems. His apena/heart monitor was downloaded yesterday as well and his neo said Eli frequently has periodic breathing (episodes of deep breathing into very swallow breathing in a pattern) in addition to his apnea/brady episodes. When he was listening to Eli's lungs with the stethoscope he was having periodic breathing so at least he witnessed it yesterday. Al and I were just beaming when his neonatologist said that we were doing an excellent job and that Eli's progress can be atributed to us!!!
Today at Eli's weight check, he weighed in at 5lbs 15oz exactly again! They decided to add 5mLs of oil to every 2.5oz of breastmilk/Neosure 30cal/oz. This will bump each feed up to 41cal/oz which is more than double the calories in normal breastmilk or formula. His ped wants to get his weight gain on the up scale as well as his intake (some days are as low as 5-6oz) so we can avoid getting a G-tube. I want to avoid this at ALL COSTS (well, except for the health of Eli). A G-tube is a surgery where they place a feeding tube directly into the stomach from the abdomen. You then feed the baby through there stomach instead of their mouth. I'm am praying it doesn't come to this and that Eli starts eating more and picking up weight. I would hate to put him back in the hospital for surgery!
If you've read this far, you're an angel. Thanks for keeping up with our little miracle. I hope everyone enjoys the new pictures of Eli. Al and I can't believe how big and healthy he's looking now. Just under one week until Eli's DUE DATE! Then we will be in positive adjusted age. We're off to go look for Halloween outfits for Carson (and maybe a little one for Eli). Can't wait to post pics of those!