Well this week had it's ups and downs... tis the story of our life! We saw the pulmonologist on Monday. She was very optimistic. She said we could start taking Josh off the oxygen about an hour a day and see how he tolerates it. She thinks that maybe in 3 months or so we will be good enough to be off of it for good... that was great news. But this is dependent on how he tolerates stuff and if he is gaining weight, which we are still having major issues with. His bloodwork was good. His levels for his jaundice are going down nicely. They aren't normal yet, but on their way. We got a referral from his pulmonologist for a GI doctor (gastrointestinal) to monitor his reflux and his liver issues. I have to call them on Monday and set up an appointment for this. Lots of doctors!
So he got weighed again on Thursday and hadn't gained an ounce. We called the nutritionist at Yale for some suggestions. We can fortify his breastmilk with more formula for 30 calories and/or add some oil to his feeds, starting very slowly. The nutritionist suggested trying the oil first. I checked out all of the oils and caloriewise they are all the same. 120 cals/TBSP. This averages out to 8 calories/mL. I decided to use grapeseed oil since I had an unopened bottle here and can use it just for Josh. The literature says its more easily digestable. We'll see! The goal is to perhaps get to 6 mL of oil a day which would be 48 extra calories per day. We are starting with .5 mL twice a day to make sure his system can take it. He seems to be doing okay with it. Tomorrow I will try 1 ml twice a day for a few days and keep increasing as he is tolerating it.
Other than that, things are well. He has his moments of baby crankiness but for the most part, he is a good baby, only cries when he is hungry/wet/tired. Lately he has been fighting sleep, I guess like all babies there is too much going on and he wants to be a part of it. It could be some overstimulation...
We have an appointment on Monday Aug 6 for Birth to 3 to evaluate him. We have been waiting for this appointment. Chances are we will have some developmental delays just due to the prematurity. I'll keep you all posted on that as well.
Well that is about it. Hope everyone is doing well! we are definitely enjoying his time at home. I have even gotten used to the lack of sleep!
Birthday Ticker
5 comments:
Glad to hear that things are going as they should. Hoping that he gains some weight for you guys!! Staying in our prayers!!
The Spaulding Family
Diana,
We check your blog often for news of Joshua. We pray that he will start to gain weight and that all will go well with your numerous doctors appointments.
Karen Bourque
not sure if you have been told about this or not. Elizabeth was on a high calorie formula, caused her to gain 4-6 oz per week for the month home. Not sure of brand name, but it came in 4 oz jars and was quite expensive. WIC paid for ours. Hope that might help a littl with the weight gain.
Donna
jdehowle@hotmail.com
I check every week Joshua´s blog and we are glad he is home. My Leon is home since end of June. His intestine reconection went well but his digestion could be better. He´s got 3 hernias on his tummy from the many laparotomies and eventually he needs a 9th surgery to repair them. Leon weight was always a big concern and he came home weighting only 2300gr and exclusively on mothermilk. the first week after homecomming we had our first "weight watcher" and he did´t gain an ounce. The doctor here in Germany prescribe a mothermilk fortifier from nestle - FM 85 - wich was really helpful thickening his stool and therefore giving the intestine a chance to absorb better the nourishment and I believe essential for him to finally get to current 3000 gr. (700 gr in 4 weeks was pretty good, indeed)
The problem now lays on my milk production wich is dropping by the day...i dont have as much time to pump as I had before, when he was in the NICU.
If you don´t mind, what is the formula you are using for Joshua? Is he only on mothermilk? I am going nuts and running out of my stored milk and the doc said that I can use any brand as long as it is start formula and keep on giving him the least I still have from MM....weird, huh?
I hope Joshua get "rund" and his jaundice clears soon. Leon was yellowish for good 2 months.
All the best,
Roberta and Leon
He's getting there the cute little man. He's working hard but he's doing good. Working with 0-3 therapist is going to be good too and help him gain strength and all. Those therapists are wonder-workers.
Good job little Joshua!
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