A day at Children’s – Friday 3/2

It was a big day for Gideon and mama. He didn’t pass his newborn hearing screening so we had to schedule a 3 hour hearing test that we had at Children’s today. 3 hours. Wow.

Here is your funny for this story: I get anxiety going to Children’s. When I get anxiety, I have what my ex co-worker calls “bad belly bart”… you can imagine what that means. I was  prepared for it and went potty 1 last time as we walked out the door around 7am for our 9am appointment. We did not make it to the hospital  before “bad belly bart” struck again. I was in dire emergency mode so I had to pull over to anyplace I could find which happened to be some sort of small construction business. Not  like a retail type of place, this was more of almost a construction trailer but bigger than that. I was DESPERATE. Really, really desperate. With sweat on my brow and tears in my eyes I screech to a hault in the parking lot,  grab Gideons car seat and blast through the front doors panting in the office startling the dozen or so male only workers in the office. Clearly I was in quite a panic and they asked what I needed. I begged desperately for them to let me use any restroom. I think they were so shocked they escorted me to the tiny little, dingy ladies room downstairs in a dark hallway. I threw Gideon on the floor outside the stall (he was still in his car seat), use the restroom and thank them immensely as I slink back down the hall and up the stairs doing what feels like the walk of shame and we head for the hospital.

We finally got checked in for our appointment, started our morning routine of 9am meds & feeding and got him hooked up for his 3 hour test. The audiologist told me that if he behaves well, the test could potentially be done in 1 hour if he sleeps good. I thought he did fantastic. Apparently I was wrong. I didn’t realize that over 1/2 of the time of the test, it was paused because of muscle movements. I didn’t know that even little eye flutters  registered as muscle movement and he never really got into a deep sleep so most of the test was spent paused and rewinding to start portions over again to check different frequencies. We started in his right ear. At 11am, I asked how it was going since it had been 2 hours and we were still working on his right ear. She said she had completed 3 of the 4 tests for that ear and we would likely be able to finish it. What about the left I asked? She said we would have to reschedule another time to come back for that because we weren’t going to have time today. Seriously?!?! I had held him in my arms (he was only on the bed when we got him set up for the test) for almost 2 hours in a very uncomfortable chair basically holding my breath trying to encourage him to sleep and we weren’t even 1/2 way done and going to have to come back again?!!? UGHHHHHH. Big, fat, bummer.

I told her if there was any way to get at least part of the left ear tested I would prefer that so we know if he has any hearing in that ear because it is questionable. The preliminary, incomplete test results for the right ear were fantastic. He does have some hearing loss but he is pretty close to the normal range and should have no problem hearing people speak and communicate so he will learn proper speech and language based off of that result. She worked on the left ear for almost an hour and wasn’t able to test anything as she couldn’t get a baseline of his brain waves for that test. She did 2 other tests, 1 to test his ear drums and their vibration and neither ear drum vibrated (that’s bad news) and an echo test to test the echo back from the cochlea and neither ear had the echo they are supposed to have either (also bad news). So we got some not so great news of no ear drum vibration and no cochlear echo as well as having to retest again in 2 months when his ear canals are a little bigger and hopefully they have more success with the test and we have to see the ENT doctor prior to the next appointment as well to check for fluid behind the ear drums. Shuzzbutt. The good news: He can hear! Pretty well out of the right ear, that’s encouraging.

After audiology, we got to go see our friend Rae, his occupational therapist. We did feeding therapy and she confirmed his great progression with breastfeeding which was encouraging. She also confirmed  his lack of progress with bottle feeding which we knew, she gave us some pointers as to how we can try to improve that. She is hopeful that we can get rid of his NG tube prior to the next surgery and if that happens, we have a higher likelihood of not having to get it put back in after his next surgery. But he needs to be very proficient with breast and bottle feeding because he won’t be able to breastfeed immediately following his next surgery and may only be able to bottle feed if he does good at it with no respiratory distress or extra work of breathing which right now, he has quite a bit of both when he bottle feeds.

THEN he decided to go to sleep… after both of our appointments before it was time to go home. Silly boy. We went to the pharmacy to pick up his refill of cardiac medication but they had made an error with it and had to re-make it for us so we went to visit our favorite nurse from recovery, Miss Danielle. She is just the sweetest thing and was so excited to see how big he has grown. I will definitely be requesting her specifically when we get back to recovery after our next surgery.

It was finally time to head home. We arrived home around 3pm, just in time for Gideons supper feeding. I had planned to take myself out to lunch today but never had the chance. Note to self: when planning a whole day at Childrens, EAT BREAKFAST and PACK A LUNCH! Oops.

I received word that my Uncle died while I was on my way home, my mothers brother. Mom & dad were at the house watching the big boys so I was in a big hurry to get home, give mom a hug and let them go to have some peace to start processing. Uncle Ed & mom were very close and communicated everyday. Please pray for my mom, my cousins Eddie & Heidi, they have now lost both of their parents and my moms 2 sisters and 2 other brothers. This will be a challenging time for all of them.

By the time I got home, my migraine was in full swing and I was choking back barf. I haven’t had one that bad in a long time. I said bye to my parents, laid down on the floor with Gideon, let Elijah & Moses play on electronics and prayed for Bo to get home from work quickly and fell asleep. Yep, mother of the year, lay down with my newborn on the floor and fall asleep. I know Bo was on his way home so it wouldn’t have been too long and Solomon was still napping in his crib, the other kids were entertained so it should  have been sort of, almost safe. Bo got home about an hour later and promptly sent me to bed. He even brought me up some food and water knowing I hadn’t eaten yet today. Then a dear friend brought a delicious dinner from  our meal train which has saved my butt SO MUCH since we’ve been home. I often feel bad that we are still receiving meals from people because today marks 3 weeks since we got home and I feel like I should have it all together by now but my goodness, these meals are so amazing and the next biggest help to playing with the big boys for me.  It’s awesome and I’m so thankful people are so generous and willing to help us out in this way. When we aren’t eating the meals that get delivered from the meal train 3 nights per week, we are eating the freezer meals that were prepared for us. We have been so blessed by all of you. I just got up to make a plate, say goodnight to the kids, get Gideon situated, eat my dinner in bed, go take a shower, pump & go back to sleep for the night. My parents rocked it with the big boys today while I was gone and Bo rocked it with all 4 of them tonight while I was sick in bed. Looking forward to some great rest tonight and a good weekend.

We haven’t scheduled our next appointments yet. I’ll do that next week so we can see ENT and try the hearing tests again in 2 months when his ears have grown a bit and will fit the equipment a little better and hopefully he will sleep for them better next time.

THANK YOU again for the prayers. Please pray for my mom (Pam), her sisters & brothers & my cousins as they process the death of my uncle.

Please also pray for clearing up of possible congestion in Gideon’s ears. They aren’t sure that’s what it is, it’s a possible cause for the lack of vibration and and echo in his ears and for easy testing next time around.

Praise for his continued growth, progress with breastfeeding, and that we had a successful day away today. It may not have been pretty but we made it and I’m so thankful for that.

And the standing prayer I suppose I should just keep on the list: guess who needs to poop? Yep, we’re overdue again and his tummy is bothering him. I’ll crack a can of prune juice for him tomorrow. Or maybe just make my own since I have prunes…

One more request, Gideon gets night time congestion.  We aren’t sure why. I’ve started suctioning him before bed and end up having to suction once throughout the night as well. They think it may be reflux but he sleeps on a wedge which is supposed to prevent that and he has never spit up, not even once. I thought maybe it was from the ceiling fan so I shut that off and it hasn’t made a difference. I thought it could be the heater so I closed the vent and that didn’t help, I’ve had the diffuser on and off and neither seem to make a difference either. But he ends up having respiratory difficulty and we both hate suctioning (I use the ‘Nasa Kleen’ similar to the nose frieda) because the bulb syringe makes him bleed and the electric snot sucker isn’t effective so that one works. But I would love for him to have respiratory ease from tip of his nose to the bases of his lungs so please pray for clear airways all the way down all night long.

THANK YOU!

P.S. My migraine is feeling much better. Now I just have a normal headache so I should be better by morning. I’ll try to drink a gallon of water tonight and not pee the bed :) LOL (yes, that was totally a joke, there will be no peeing the bed).