Journal entry by Tatia Kuehn —
I know, I know. It's about time for a Charlie update!
It has been very busy in the Kuehn household. I know it's expected for sleep deprivation when you have a newborn, but dang! She's not even home yet!
We are officially a week past Charlie's due date. She is 4 months old actual, 1 week adjusted. Until Charlie is two years old, she will have 2 ages. The adjusted age will be what we go off of for all milestones. Well, she already lifts her head and smiles (she has a HUGE dimple in her left cheek when she smiles).
She still hasn't decided what color her eyes are going to be yet. They're either going to be green or brown. She's indecisive.
We're currently sitting on 2 liters of oxygen, but very consistantly at 21%. They do not want to switch her to home oxygen yet (even though they think she can hande it) because of her eyes. Oxygen feeds the ROP diagnosis. Just last week, we found out that even though she is Stage 3 in both eyes, they have started to see some improvement, which is AMAZING! According to our nurse, very rarely do they see the disease worsen once it has started to improve. Her eyes may stablize and may NEVER need surgery. Woohoo!
She was diagnosed with a VUR which pretty much means that the uriters that connects her left kidney to her bladder is refluxing urine back up into the kidney. It's a Grade 3 which means that it has a 50/50 change of needing surgery to correct it OR it correcting itself. We wait and see. In a few months, they will do a repeat scan to see if there is any improvement. Until then, Charlie takes a small dose of amoxicillin each day to prevent a UTI. This could also explain why there is protein in her urine. They will continue to monitor her for that as well.
The hardest part lately is that we are in a stand off with Charlie and her bottle. She has been having some fast breathing. They did a brain MRI to see if there was anything that could be causing her fast breathing. Her scan came back and there wasn't a concern there (thank goodness)! However, because she hasn't been taking a bottle, there has been some talk of having surgery to get a G-Tube placed for food. While it would get her home sooner, I'm not quite ready of talk for a surgery. I'm not ready to give up on her yet.
This last week, we also talked to the doctors about her formula. Both my sister and I were on soy formula when we were little as we couldn't handle regular. We were noticing that every moment of every day, Charlie was pushing so hard to poop. She was also having around 8 large stools each day. Ouch. No wonder her little booty was so sore! We switched to Elecare which is a hypoallergenic formula which is more broken down. It was a fight to get the doctor to switch, but after a few phone calls and an okay by the nutritionist, we were switched. It has been night and day for her! She seems soooo much more relaxed and happy. Also she has been stooling less. Her bottom is really sore right now, so hopefully with less stool, it'll clear up faster.
On Thursday, I had my gallbladder out. Yep, had to follow in Kenny's footsteps. I'm recovering nicely and moving around much better than I was. Still sore. Still tired. But have not missed one day with my little girl. I was even able to hold her on Sunday! Going to actually try to sleep in my own bed tonight. I've been on the recliner since Thursday. My wonderful husband has been sleeping on the couch next to me in case I need anything in the middle of the night. He's been great helping me lower the foot rest and getting the chair to sit back up, a few things that I'm struggling to do with the pain.
Anywho, right now were in a waiting game with Charlie. Not sure who she gets her stubborness from, but she'll realize at some point how enjoyable eating really is! Until then, we wait and continue to get ready for her to come home!
No offense, Peoria, but I'm beyond ready to not to have to drive to you EVERY day.
Kenny and I have also started a Facebook group for quick, daily Charlie updates. The CaringBridge will be up until Charlie goes home. Then all updates will switch to Facebook. The group is called "Charlie Kuehn". We have posted tons of Charlie videos and pictures! It's a lot easier/quicker to post on there with our limited time!
Hope all is well! Keep our prayers coming! She is definitely showing us her strength every day!
Tatia
It has been very busy in the Kuehn household. I know it's expected for sleep deprivation when you have a newborn, but dang! She's not even home yet!
We are officially a week past Charlie's due date. She is 4 months old actual, 1 week adjusted. Until Charlie is two years old, she will have 2 ages. The adjusted age will be what we go off of for all milestones. Well, she already lifts her head and smiles (she has a HUGE dimple in her left cheek when she smiles).
She still hasn't decided what color her eyes are going to be yet. They're either going to be green or brown. She's indecisive.
We're currently sitting on 2 liters of oxygen, but very consistantly at 21%. They do not want to switch her to home oxygen yet (even though they think she can hande it) because of her eyes. Oxygen feeds the ROP diagnosis. Just last week, we found out that even though she is Stage 3 in both eyes, they have started to see some improvement, which is AMAZING! According to our nurse, very rarely do they see the disease worsen once it has started to improve. Her eyes may stablize and may NEVER need surgery. Woohoo!
She was diagnosed with a VUR which pretty much means that the uriters that connects her left kidney to her bladder is refluxing urine back up into the kidney. It's a Grade 3 which means that it has a 50/50 change of needing surgery to correct it OR it correcting itself. We wait and see. In a few months, they will do a repeat scan to see if there is any improvement. Until then, Charlie takes a small dose of amoxicillin each day to prevent a UTI. This could also explain why there is protein in her urine. They will continue to monitor her for that as well.
The hardest part lately is that we are in a stand off with Charlie and her bottle. She has been having some fast breathing. They did a brain MRI to see if there was anything that could be causing her fast breathing. Her scan came back and there wasn't a concern there (thank goodness)! However, because she hasn't been taking a bottle, there has been some talk of having surgery to get a G-Tube placed for food. While it would get her home sooner, I'm not quite ready of talk for a surgery. I'm not ready to give up on her yet.
This last week, we also talked to the doctors about her formula. Both my sister and I were on soy formula when we were little as we couldn't handle regular. We were noticing that every moment of every day, Charlie was pushing so hard to poop. She was also having around 8 large stools each day. Ouch. No wonder her little booty was so sore! We switched to Elecare which is a hypoallergenic formula which is more broken down. It was a fight to get the doctor to switch, but after a few phone calls and an okay by the nutritionist, we were switched. It has been night and day for her! She seems soooo much more relaxed and happy. Also she has been stooling less. Her bottom is really sore right now, so hopefully with less stool, it'll clear up faster.
On Thursday, I had my gallbladder out. Yep, had to follow in Kenny's footsteps. I'm recovering nicely and moving around much better than I was. Still sore. Still tired. But have not missed one day with my little girl. I was even able to hold her on Sunday! Going to actually try to sleep in my own bed tonight. I've been on the recliner since Thursday. My wonderful husband has been sleeping on the couch next to me in case I need anything in the middle of the night. He's been great helping me lower the foot rest and getting the chair to sit back up, a few things that I'm struggling to do with the pain.
Anywho, right now were in a waiting game with Charlie. Not sure who she gets her stubborness from, but she'll realize at some point how enjoyable eating really is! Until then, we wait and continue to get ready for her to come home!
No offense, Peoria, but I'm beyond ready to not to have to drive to you EVERY day.
Kenny and I have also started a Facebook group for quick, daily Charlie updates. The CaringBridge will be up until Charlie goes home. Then all updates will switch to Facebook. The group is called "Charlie Kuehn". We have posted tons of Charlie videos and pictures! It's a lot easier/quicker to post on there with our limited time!
Hope all is well! Keep our prayers coming! She is definitely showing us her strength every day!
Tatia
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