Josiah Update XP

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MommyMish's picture
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Josiah Update XP

Josiah had his Mayo appointments yesterday.

First the good news. In the month of June, he's gained 10oz, making him 12lbs 8oz. Also, mentally, his development is spot on, if not advanced.

The bad news?
-He's not pooping. He'll go anywhere from 2-3 weeks between bowel movements. They are questioning if maybe non-painful constipation is causing the reflux. Josiah will be started on a prescription and a home remedy for this with a goal of getting bowel movements every other day.
-He's behind physically, though he is rolling.
-He's not gaining enough despite the growth this month. He's still below the growth chart and not working in proportion to his height.
-His spitting has not reduced at all, despite the weight gain and fortified breastmilk.

So what this all means is that this week I have to feed Josiah only fortified Neocate. Between that and the constipation remedies, if it is further food proteins that he's reacting to then he will improve on the Neocate without breastmilk. Because he does have a slight eczema rash, they are strongly suspecting that his stomach is just super sensitive right now. Talking to the dietician, I am eating correctly, and to take any more products out of my diet would compromise my health.

I am still pumping this week, but moving to every 6 hours instead of 4. I am still holding to the very slim hope that I will be able to and least pump and fortify milk for Josiah. I want to breastfeed very badly. I failed with Caleb due to lack of knowledge and his pyloric stenosis. By the time he was diagnosed, my supply tanked and never recovered. With Anna, I failed due to undiagnosed PPD. Both of them were on formula by 4 months. Katie never once received a single drop of formula. We had a successful breastfeeding relationship until she self-weaned at 9.5 months. I wished I could have fed her longer, but she refused everything, even formula. She was eating as much as her siblings by then though. Now this with Josiah. It's like I'm doomed to not be able to breastfeed. I do rejoice that I was able to give them as much as I have. I know I'm not a bad mommy because I have to stop breastfeeding. I am reassured that it's not me and what I ate that is making Josiah have troubles. And still my heart is VERY heavy and I mourn the likely loss of breastfeeding.

To make matters more frustrating, my insurance is saying Neocate is not a medical neccessity because he hasn't failed on at least 4 other formulas. They won't except that breastfeeding, eliminating dairy, gluten and soy from my diet brought major improvements. We're appealing the system now, but until then... I had to go through the beginnings to get Josiah on WIC. WIC is dismayed that I don't want to put myself or Katie on it too. Well, we didn't have financial need until Neocate. Plus, I can't eat 3/4 of the foods allowable on WIC.

So, that's what is up with me and Josiah.

StateChick's picture
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Mish, I want to reply to this at length...be back at naptime...

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Michelle - I am really feeling for you guys right now. What a challenge! You're doing the right things, and I know that not breastfeeding is weighing so heavy on you. I wonder why his little body is giving him such a hard time. I really hope that you can get his formula without having to pay an arm and leg. Insurance can really suck sometimes!

:bigarmhug:

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I'm sorry, I am babysitting today (+ my two) and don't have a ton of time right now b/c ILs are also coming over for dinner!

Anyway, have Josiah's doctors considered that he may have an eosiniphilic gastrointestinal disorder (EGID)? We are still trying to get a firm diagnosis for Ella (thought we had one...now not so sure). Some of his symptoms are characteristic from what I've been reading... http://www.cincinnatichildrens.org/svc/alpha/e/eosinophilic/default.htm

A word re: the formula - Neocate has been the BEST thing in the world for Ella. I nursed her for 9+ mths, doing total elimination of dairy and rice part of the time, and she had complete failure to thrive. Although the nursing relationship and benefits are so important, it made my heart happy to finally give her some nourishment that she is successful with (the Neocate).

I tried to "do what was best" for her by nursing, but ultimately it was NOT the best thing for her. She was constantly in pain and clearly not growing, and then even losing weight.

When she began the Neocate she completely weaned herself from the breast within a week and she displayed a sense of well-being and contentedness (sp?) that I had not seen her whole life. I am hopeful that Josiah will also feel much better if he takes the formula.

re: the cost - we are still getting the run around from insurance. We have been very fortunate that we are getting samples from all three of our doctors right now. We are a single-income family, but we don't qualify for WIC. It is a shame to me that insurance companies won't pay for it but WIC will. If it is available to you, please take advantage of the WIC without any guilt. We don't qualify, but right now God is providing in other ways.

Anyway, sorry if this is random. Please KUP.

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Glad you got some answers, but I am sorry you are dealing with all this right now :bighug: I can understand the loss of BF being hard on you (it would be on me too)...but keeping both of you healthy is most important. I work with a lot of kids with feeding issues (I work at a pediatric rehab facility that has both outpatient and inpatient feeding programs in which speech, OT, nutrition, psychology, etc. all work with the kids). I know that sometimes it is a trial to figure out just what these kids need...and I have heard about neocate (and similar formulas) being tough to get funded. Definitely take advantage of WIC providing the neocate until insurance comes around/if insurance doesn't come around. It stinks that they don't realize that you eliminating all those things in your diet and him getting BM is as good, if not better than trying 4 different formulas (which if he had to do that to prove it to them, he would likely have more trouble/get sick).

Try not to stress (easier said than done, I know), and know that you are doing your very best for him...you are a wonderful mom for going to all the lengths you have to get a diagnosis, the right treatment, etc. If you guys were closer I would come play and do PT with him to help with the physical stuff...he is too cute...and I love working with little cute ones Smile

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I'm glad that they are working towards a full diagnosis for him. I wanted to chime in as a Lactation Educator (soon to be consultant!!). The first rule that we are taught is "Feed the baby, Period." While breastfeeding is the optimal first choice, you have to do what is needed for the health of your little one. When a formual is "prescribed" with good reason then that is the most important thing that you can do for your baby for whatever the prescribed length is. You can continue to pump if you choose and keep a stash in case he is allowed to breastfeed again, it will stay for up to 6 months in a deep freezer. If you want some info on pumping etc send me a pm, I don't want to go way off topic Smile

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You've gotten great thoughts thus far. I just will also add you both to my prayers Michelle. I pray that God will give you peace with all this and that your little boy will begin to thrive and be content. Hugs mom!!

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Well, overall it sounds so frustrating. I'm so sorry breastfeeding is not an option right now. I hope that it is only temporary. I hope his system settles down.

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Thanks everyone. We're on day 2 of constipation medicines and only fortified Neocate. He is still spitting up, but it seems to be less. His energy level is through the roof. He's wiggling, squealing, laughing so much more. He's pooped twice, but is still straining to go so hopefully the meds will continue to help regulate him. I'm guessing from the looks of just these 2 days, we're likely to end up with Neocate only for him.

WIC approved him today and we're allotted 11 cans of Neocate a month. I just pray that's enough to last the whole month. Because we have to fortify his bottles, we use more powder then just the regular amount.

Lauren- Is there anything I can be doing with him to help encourage the physical side. We have seen a chiropractor and between that and exercising his legs, he can now get his feet to touch his forehead. (Before he couldn't even touch his chin his pelvis and low back were so locked up.)

Kat- If I end up being wrong and can go back to breastfeeding, I will contact you. I'm having trouble adjusting to an Ameda double pump (which is what insurance would pay for).

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how old is he again? and you said he IS rolling? any other stuff he has trouble with physically, other than his back being tight? For that, get him to play with his feet as much as possible (you can even put toys/rattles on his feet for him to get)...or you guys can passively bend his legs so his feet are up by his head (I am sure you know that one already).

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He is rolling, but pretty much only to the left. We are doing the passive foot thing and a side stretch with him.

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Oh and he'll be 6 months on the 18th

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sometimes to get kids to roll both ways, I will get kids to reach across their body (while lying on their back) to the side i want them to roll...like reach for a toy on that side. you can help by bending the opposite leg up (like if rolling to the left, reach across with right arm and bend up right hip and knee) If that makes any sense...sorry it is easier to show it than type it Lol also working on supported sitting and practicing rolling belly to back (that is usually easier than back to belly)

Wish I could be more help...I am a much better therapist in person haha! Keep up the great work, Mish Smile

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I am so sorry you're experiencing all these difficulties. I hope that you continue to see an improvement with everything chick. xx

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"StateChick" wrote:

I'm sorry, I am babysitting today (+ my two) and don't have a ton of time right now b/c ILs are also coming over for dinner!

Anyway, have Josiah's doctors considered that he may have an eosiniphilic gastrointestinal disorder (EGID)? We are still trying to get a firm diagnosis for Ella (thought we had one...now not so sure). Some of his symptoms are characteristic from what I've been reading... http://www.cincinnatichildrens.org/svc/alpha/e/eosinophilic/default.htm

A word re: the formula - Neocate has been the BEST thing in the world for Ella. I nursed her for 9+ mths, doing total elimination of dairy and rice part of the time, and she had complete failure to thrive. Although the nursing relationship and benefits are so important, it made my heart happy to finally give her some nourishment that she is successful with (the Neocate).

I tried to "do what was best" for her by nursing, but ultimately it was NOT the best thing for her. She was constantly in pain and clearly not growing, and then even losing weight.

When she began the Neocate she completely weaned herself from the breast within a week and she displayed a sense of well-being and contentedness (sp?) that I had not seen her whole life. I am hopeful that Josiah will also feel much better if he takes the formula.

re: the cost - we are still getting the run around from insurance. We have been very fortunate that we are getting samples from all three of our doctors right now. We are a single-income family, but we don't qualify for WIC. It is a shame to me that insurance companies won't pay for it but WIC will. If it is available to you, please take advantage of the WIC without any guilt. We don't qualify, but right now God is providing in other ways.

Anyway, sorry if this is random. Please KUP.

Working at human services, just wanted to let you know a small loophole that may help you get eligible for WIC... with the high income guidelines for infants, you may want to apply for medical assistance for just her and then apply for WIC. If they're MA eligible, they're automatically WIC eligible. I know in our state, if you apply for MA for yourself while pregnant (which very few women who apply are over income guidelines), your child automatically becomes eligible for MA for the first year which then makes them automatically eligible for WIC during that time as well, even if you have private health insurance. On top of that, any insurance that covers pregnancy is automatically considered cost effective for the state to pay the premiums for the private health insurance since it would be cheaper for the state to pay the premium than pay the full cost of prenatal and delivery, etc. I believe most states have opted that federal election for reimbursing cost effective health insurance since they get reimbursed for this option by the feds.

Mish - I hope that things only go uphill from you. I can totally relate with the BF issue as I've had problems with a few of them as well and felt like I've failed them even though I know it's not my fault. KUP. :bigarmhug:

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Josiah is still spitting about the same amount as before. A lot depends on how much he eats at a time. He's hungry and he wants to eat but then he spits a lot if he eats more then 4 oz at a time. He seems to do much better in the morning then later in the day. I wonder if his stomach med has anything to do with that.

I've dried up almost completely. But I decided to because even though he's still spitting so much, he's gaining. I feel the difference when holding him. Plus he's much more energetic, and vocal, and interactive. He started getting stomach cramps from the constipation medicine, and since he pooped twice today, I'm glad I cut the dose (which the doctor said I could). Will have to see if we should continue with that or what. I don't know if he's considered still constipated or not.

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Oh Mish, I am so sorry you are going through all of this with your little one. You are one strong mother. Just wanted to send hugs and let you know I will be thinking of you guys.

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Big hugs to you and prayers for you and your family. So sorry you are going through all of this. I totally understand you on the BFing. I had issues with both ds and dd. I remember the day I had to start supplementing ds I cried a lot. Hope you continue to get answers and better news as the days pass.

TFS and KUP.
Sounds like these ladies offered some great advice as well. Praying for the best