Appointment Day Update 5/30

THANK YOU for your prayers! Oh my word, did God hear you all and bless us today! Readers digest version: Gideon ROCKED the day, he did so good! It was a long day with a lot of stuff but he did great and all our results  were ….. well, maybe not all totally awesome but great information and gives us more info to work with. If you want more details… read below :)

We arrived at the clinic early and had time to get a coffee from Starbucks. We checked in for our ENT appointment 20 minutes early and the speech pathologist and occupational therapist showed up early so we started with them before ENT. We went over his previous tests and updates and changes since then. We were at ENT to get his ear canals checked because he didn’t pass his previous hearing tests and they didn’t  know if it’s  because his ear canals are so teeny tiny, if they are deformed, if the nerves are damaged, if there is fluid behind his drums or what reason he failed his test before. I had a momentary lapse of brain function and asked the ENT doctor to check his eye as he always seems to have a leaky eye. The pediatrician and cardiologist have both checked it for me and told me it looks like it’s probably just an under developed tear duct and as long as it’s draining well, it’s ok. They also said it looks like he may have protein in his tears which is also just fine. He doesn’t have an infection, his eye just drains and pools in the corner of his eye so it gets goopy but he should grow out of that.  Good news #1 for the day, his eye is fine! Then I remembered that ENT stands for ears, nose & throat not eyes, nose & throat. Hahaha. Whoops. Yep, scrambled eggs up sometimes, there I swear.

Then we set up for the FEES study, the one where they shove a camera up his nose to see how he swallows while on the breast. We did an x-ray swallow study last time to see how he did with the bottle and he had micro aspirations that time so they wanted to see how he did on the breast since he is exclusively breastfed and never takes a bottle because he doesn’t take a bottle well. I had joked about Bo saying ‘I wonder how many people will see my boob today’ knowing there would be at least a few people in the room for the study. At one point, I looked around while Gideon was nursing and counted 9 people in our room, ourselves included. Hahaha. I was totally covered though. Gideon did great during the study, good news #2 for the day! They also checked his nasal passages for us since we asked them to check that as well as they have never been able to get an NG tube down his left nostril, we wanted to make sure the anatomy on the left side was good like the right, they confirmed that it was. Yay.  Good news #3 for the day. 
Next was to the procedure room to get his ears cleaned. Lucky for me, I was  having a meeting with the speech pathologist & occupational therapist to go over the results of the swallow study and missed that. I do not like to be there when they do procedures on Gideon that make him scream and cry so I’m thankful Bo was there with him while it happened and they just brought him back to me as soon as it was over to comfort him. I didn’t even watch during the swallow study when they put the camera in or watch on the camera while he was eating.  I’ll just fix it all for him when it’s all done and over with but I don’t want to watch. The doctor cleaned his ears and was able to see his ear drum  on 1 side and there didn’t appear to be any fluid behind it at  all. Yay! Good news #4 for the day.

Next we met with the occupational therapist  to get directions on thickening his liquids. He still needs to increase his calorie intake and they wanted me to do that by doing what I’m doing already but replace the rice cereal with 2 bottles per day thickened with non nutritional gel. Gideon doesn’t suck/swallow/breathe very well when he gets tired which happens pretty quickly when nursing so thickening his liquids should help with that if he gets 2 bottles per day that are thicker so easier for him to swallow. I asked her about thickening with something that has nutritional value and calories in it and she told me I could thicken with rice cereal. She was pretty opposed to feeding him rice cereal with a spoon because he is only 4 months old and doesn’t have much strength or control in his trunk/neck/head yet. So she taught me how I can thicken his liquids with rice cereal and feed it to him in a bottle. We tried it and it didn’t go well. They gave him a larger size nipple than what he has used in the past and he guzzled and choked even on the thicker liquid. So she said we would have to thicken even more. I told her why not use the smaller nipple that he is used to so she decided to do that. He did better but still not great, he guzzled and choked again. She wanted to thicken more, we talked about just thickening a lot and spoon feeding him (which is what we have been doing and works pretty well for the most part) and she said she would contact the cardiologist to see what he says about it. I will bet money that he will reply and tell me to do what I feel is best for him since I know him the most and I know the signs of  aspiration as well as reflux and they as long as he continues to grow and remain healthy. I should hear back tomorrow. Sort of good news #5.

Next we were onto audiology for his 3 hour hearing test. The one I did alone with him back in March. Lucky for us, this time, he had just finished eating a ton as well as screaming a ton and was beyond exhausted. We got him changed, swaddled and snuggled on daddy’s chest to get to sleep. Bo got him to sleep very quickly and they started the test. I snuck out to go reheat my coffee that was 3 hours old and pick up his prescription from the pharmacy. Last time we had this test, we were unable to complete even 1 ear during the whole 3 hours we were there. When I got back from picking up his prescription, they had completed 1 ear all the way with great results and were halfway done with the second ear already. 
She finished the test and told us he had great results. It took just under 2 hours total and he was heavily sleeping the entire time. He has very minor hearing loss at a very high pitch and low volume in both ears which could just be due to his tiny ear canals that he may grow out of. Even if he doesn’t, it’s so minor it likely won’t even affect him at all because he can still hear all the sounds of speech and language at normal volumes so his hearing is good. Good news #6!

We got to leave an hour and a half early which we were also excited about, to pick up the big boys, relieve my parents and get everyone home for dinner. Sadly, it took us an hour to get from Childrens onto I5 to get home even taking the back road, side route that waze recommended. We got to my parents, hung out for just a while and are now getting everyone to bed. Myself included. We are all EXHAUSTED. But what a blessed day it was! All of our prayers were answered, We got so much good news about Gideon, I didn’t get bad belly bart, the kids behaved at my parents house, we can’t thank you enough for lifting us up in prayer today, it was heard, felt and appreciated so much!

Gideon has gained more weight, he is now up to 9 lbs, 3 oz and we do need to get more calories into him to bulk him up before surgery but I’ll figure that out. I have avocado, rice cereal with breastmilk, cream cheese or butter. Any other recommendations of super high fat & high calorie foods that are simple with only 1 ingredient each?  If so, comment on the blog or on the FB post to let me know if your high fat, high calorie, simple food puree texture ideas.

Seriously, we can’t thank you enough for the prayers. Please keep praying for weight gain & strength for him. We would love for him to be quite a bit stronger before surgery and they are still shooting for 12 lbs before he goes back in but we’ve only got just over a month to get there.

Thank you, thank you, thank you. Blessings on all of your heads for the love, support & prayers!