Updates: it’s been a while

Updates: it’s been a while


(Wednesday)

Today was pretty stressful. Em hasn’t been eating his normal 1k calories. (Yes that is high for a 9 month old adjusted baby; however, he is very underweight and everything he eats is fortified to improve calorie intake) Anyway, The calories have been cut down to 400. He spits out the purée pouches, and he sleeps All. The. Time. For example, he slept a full 13 hours last night, and took two four hour naps. Needless to say, mommy had that gut feeling. 


We had the scheduled appointment follow up for Thursday. After contacting em’s old doc from UCLA bc he’s extremely easy to get a hold of, he suggested we bump the appointment to today. Anything that can jeopardize his heart needs an immediate action. Turns out, his old UCLA Doc used to work with his new Kaiser Doc, and they did some behind the scenes consulting. The end result, come in A day early!


At the doc: We did the normal exams, and checked his scar. Everything looks great: except for the weight gain. Next, echo: Luckily, em’s heart looked decent. Not much changed from the last appointment. His pressure rating is still at a 12, and if it can stay that way, we are Cool. Beans.



Back to talking about his calories and weight. This is a normal conversation with every doctor we come in contact with. To put this in perspective for you, he is almost a year old, and he wears 3 month clothing, size 2 diapers, etc. 


He only gained .2 oz from 2 weeks ago. THIS is concerning. (As usual) He’s officially dehydrated: One, because He’s not eating, and Two- the diuretics he’s on. The doctor suggested that we watch him, and if he gets any worse, we being him to the hospital So, we went home and guess what?! Em took his second nap- 4 hours and never ate... 


When he woke, he was HOT. Mommy gut: fever. It was about 101, and I called the doc. He suggested to take him to the hospital for fluids bc of the lack of calorie intake, the fever, the everything. 


No one prepares you for a baby. You just kind of figure it out as you go. Holden was an amazing baby. Once we figured out his milk allergy, he was soo easy. Even with his physical, occupational, and speech therapies and being on the spectrum- easy. 


Definitely NO ONE prepares you for  super special needs baby. It has been extremely stressful and I’m exhausted thinking about it, but he is pushing me daily to be a better mom- but also testing my mother skills every minute. 😳


After waiting for a Bit, the urgent care

Pediatrician and cardiologist on call did an exam, and suggested that we not prick him for fluids and want us to just monitor his diapers, fever, calories, etc overnight. 


Morning after: His fever has been reduced, and he seems decent. We have a phone appointment later today. I made him a bottle, he ate about half. So, instead of 135 calories, he ate 80- still not great.


I am still VERY concerned about his calorie intake. He hasn’t gained weight, and he isn’t interested in his bottle or food. Next step, GI doc who had previously suggested a feeding tube. I’ve come to terms with this tube. It has been suggested since he was out of NICU. 


At this point,

I’m ready for it. 

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