Yesterday’s update was delayed because Dr Lipsky had the day off, and Dr Sahni is simply, Dr Sahni, hence, the brevity of yesterdays update. We’ll get you caught up today, starting with Asher’s favorite: Bath Time!
Last Night – Hospital
We didn’t get any updates until we were on our way to the hospital around 7pm. Dr Sahni called and told us that they’re concerned about his eyes. Didn’t give much information after that. Monica began asking questions about some of the procedures for his eyes, which we don’t think Dr Sahni likes. She had mentioned that Asher may need to get injections into his eyes and Monica asked “is he old enough to get those now?” To which Dr Sahni replied “This isn’t up for debate”…
Having a rough night? Maybe…
Anything close to the compassion for both parents and patients that Dr Bragg or Dr Lipsky have? Hardly…
The call ended pretty quick with no other updates. But we were fortunate to get the rest of the updates later on that night…
Note to our family: We love you, we’ve got this 🙂
The Eye Exam
The specialists in California said that they want to do an additional eye exam today to confirm what they saw in exam one: ROP Level 1 Zone 1 in his left eye, Level 0 in his right eye with a premature retina…
Level 1, level 2, and sometimes level 3 typically resolve themselves which leaves the child with normal vision. This is what we’re praying for…
Here’s the link to the KidsHealth documentation on ROP that we were given last night…
Remember, this was caused by the amount of oxygen Asher’s been given. The risk from the O2 (ROP causing blindness) outweighs the benefit of him being able to breathe. He can’t live without Oxygen, but he can live without sight. We’re praying over his little eyes. God willing, they will resolve on their own and he will have normal vision. If it’s the alternative, we will rejoice in the Lord that we have our son and will adjust accordingly…
At this point, news that isn’t “preferred” goes in one ear and out the other. We are ready for anything and believe that God will pull us through anything that we can’t handle on our own…
The adage “God wont give you anything that you can’t handle” is found no where in the Bible and is pragmatically false. WE CANNOT HANDLE THIS ON OUR OWN. OUR LORD IS THE ONLY THING CARRYING US THROUGH THIS JOURNEY. WE SIMPLY DON’T HAVE THE STRENGTH TO DO THIS ON OUR OWN…
The Cortisol Test Results
The results from the cortisol test show that his adrenal glands are functioning at normal levels. Praise God for this victory!
Dr Lipsky said “he passed with flying colors!”
Feeds
Feed volume as of last night was 6.5mL/hr continuous. They did slow down and hold him at 6.5mL/hr because his tummy was a bit full and needed some help via enema to clear out…
His tummy still looks good, feels good, and sounds good. They’ll stay at 6.5mL/hr until he shows tolerance, then they’ll up him to 7/7.5…
Weight & Measurements
As you saw in the bath time video, Asher is in the 3lb club. He’s weighing in at 3lbs 1.03oz. This was after a huge bowel movement too!!
The circumference of his belly is in normal range…
The circumference of his head is up and down (went from 27.75cm to 27cm to 27.5cm within matter of 24 hours…
His length is now 13.8″…
When The Balls Drop
Yes, testicles have dropped…
He’s basically a grown man now…
Skin To Skin With Dad
7:01am – Text Message
Good morning mom and dad! I had a great rest of the night after my bath last night! I stayed just chilling and relaxing the whole time! Nurse Kelly is pretty jealous, she asked me to scoot over so she could a nap too, but I told her she was too big to fit 😂
My gas this morning was awesome! My CO2 is down to 49! They weaned my vent pressure settings down to 22 from 24…one big step in the right direction!
My tummy and my head both still look great this morning. I even slept through my 0400 party hour!
My eye exam must be later in the day today bc they didn’t come around and tell nurse Kelly when to dilate my eyes…so please call and check on me later 🥰
Oh and in case you didn’t do the math last night I gained a whole 70 grams last night making me the heavy weight champ coming in at 3 pounds 1 ounce! 💪🏼💪🏼 and I’m now 1 foot 1.8 inches tall!
Can’t wait for more snuggles and loves today!
Love you lots
Always
💙 Asher 💙
2:16pm – Hospital
Asher’s eye exam happened this morning at 10am. Whatever showed in the images today has now warranted a third eye exam this evening with the attending ophthalmologist…
The concern: although rare, cycloplegic eye drops have been shown to cause seizures. We don’t know what drops they used exactly, but every time the chances of something being rare comes up, we seem to be in the “rare” group…
At 1pm Asher had a bad seizure that lasted approx 30 minutes, even after a loading dose of phenobarbital and Ativan. The nurse said she thinks it could be from either the exhaustion of the eye exam or the weight he’s gained and the level of phenobarb drip needing to be recalculated…
We never really know what causes these episodes. We’re praying he doesn’t have another seizure tonight. If he does, we’re going to suspect the drops as a possible cause (along with being on a lower phenobarb drip)…
On a lighter note, the NICVIEW bedside cameras have been installed 😀
We’ll have login information as soon as they’re live 🙌🏻
2:45pm – Dr Lipsky Update
Dr Lipsky said that Dr Snyder will be in tonight to examine Asher’s eyes. She said the examine today made it difficult to see anything beyond the cloudiness of his eyes. Dr Snyder will make the diagnosis tonight, and if need be, Asher will begin treatment for ROP with the Retinologist as early as tomorrow…
To add to that, an MRI has been ordered for tonight. Dr Lipsky is working a 24 hour shift and said that she’d go down with him if they do it early enough and she was available…
The reason being is the CSF fluid they recently pulled is still showing high white blood cell counts but negative for cultures. They need to confirm the infection is gone (or if something else is going on) as the 14 days of antibiotic treatment ends today…
He’s scheduled for a head ultrasound tomorrow and is on standby for another ventricular tap pending the results of all of the above…
We’re buckling up for a long night and praying for Gods mercy on our son…
5 replies to "Day 54 (32/2)"
In all things, give praise…..we love you, Asher! 💙
Praying for God’s mercy on Asher 🙏🏻🙏🏻 Jesus I Trust in You 🙏🏻🙏🏻
Praying praying praying
Father, we commit Asher into your mighty hands and we continue to praise You.
Auntie Ash loves you baby Asher 💛 pleading the blood of Jesus over you 🙏🏼 from top of your head to the soles of your little feet🦶