UGH! Why is it that everytime something starts working we have to mess with things!?!? This medical life is sure a roller coaster! Up until about 4:00pm I was feeling pretty good about stuff right now... and then I got a phone call...
Lydia had her visit from her home nurse today. I really like the nurse! Lydia gained weight this week and is up to 9lb!!! Huge deal and so excited! She is now one pound over birth weight. It has been a hard fought for pound but we made it. The nurse called our GI nurse after we left to let the know Lydia's weight. Then the GI nurse called me after talking to the doctor.
Now the doctor thinks the weight gain is because Lydia is no longer on a milk based formula so now she thinks maybe Lydia's issues are all milk protein based. Let me explain why this makes no sense to Brent and I
-I have a milk protein allergy therefor I am careful about the amount of milk protein I take in because if I don't I get an ear infection. If you see me consume dairy (I am fine with processed cheese cause there is so little real dairy in it) it is a calculated choice. I was even more careful when I was nursing and pumping. Lydia was getting next to no dairy from my breast milk because I was not eating dairy. She was not gaining weight right on my breast milk when she took it orally because she could not get enough in and all of the pain and choking. Once on J feeds she gained weight great on breast milk.
-My breast milk was measured and found to be 25cal... the milk based formula she was on was 19cal... the is a difference of 6cal per ounce. She gets about 20ounces a day... So on my breast milk she was getting close to 500cal a day, on milk based formula she was getting 380cal a day... that is 120cal difference. That would be why she only gained 1ounce in 9 days while on milk based formula. Also when she was on breast milk we were giving her 1oz of formula a day and she was nursing twice a day so there was even more calories she was getting. Now the non milk formula is at 22cal so she is getting 440 cal a day. Apparently for her 380cal is enough to maintain and 440cal is enough to gain.
-We switched formulas because Lydia started having green poop and was more irritable on the milk based formula but we took a kid who was not getting dairy in breast milk to dairy based formula when both her mom and sister have dairy issues. We DID NOT switch formula because of the weight.
So now they want us to go see speech to see if we can get her back to oral feeds and cancel her surgery in September. If I thought that the root of her issue was milk protein I would be all for this plan, but my logic will show that the milk was not the reason she did not gain weight, the difference in calories is the reason. This is the same child who still wakes up choking on her own saliva at night. This is the same child who puked all over yesterday. This is the same child you can still hear reflux... but hey lets give her food orally again so she can puke on us and choke more. Lets risk it ending up in her lungs. Brent and I were just talking this weekend that we are so hopeful that with putting Lydia NPO earlier that we protect her lungs and they don't get as bad as Jillian's. Ugh!
Tubes in the nose are good for SHORT term but they can cause issues. Jilli ended up having all sorts of sinus/ear issues while having a tube in her nose and I would like to not have to have Lydia have those as well. We have also already had the NJ tube clog twice. Thankfully I was able to unclog it myself but NJ tubes are great at clogging. NJ tubes also keep the sphincter at the top of the stomach open which does not help reflux and having a tube run down the back of the throat is not super helpful with gagging. I don't want to jump at surgery but I also get why this surgery can be beneficial.
So I feel like we had a good plan and now with lack of logic we are messing with things. I know it typically takes a while to get into speech and I am worried that they will not have an appointment until after surgery is scheduled and them we are stuck. The person to schedule us with speech is not in again until Monday. Then we just have to give her milk and watch her fail. I HATE doing that.
I tried to logic with the GI nurse but her hands were tied, this is what she was told to tell us. I'm frustrated too because normally the GI and I work really well together and I am just not comprehending this laps in logic. I wish I could just talk to her and reason with her. I did ask the GI nurse about what is going on with the upper GI study and she was going to check with the dr and get back to me so maybe then I can talk to her again about all of this.
I did have my follow up appointment from my c-section today and the dr said everything looks good and is healing nicely. Yeah! The dr said is is going to miss seeing Jilli so much. Jilli came with to almost all of my ob appointments and she and the dr had fun together. My ob is great but from now on it is just yearly appointments.
On a plus side, Lydia has learned how to social smile. I love her smile. Last night every time I thought she was sleep she would open her eyes and just look at me like "psych." She woke up a lot last night wanting her passy but once I put it in she would go back to sleep. Hard to believe she is 7 weeks old already but at the same time it feels like she has been a part of our family forever!
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