https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Sat, 06 Jun 2026 08:22:15 +0000 https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1844702 Tue, 02 Sep 2014 07:36:08 +0000 spaniellove 1844702@https://boards.hellobee.com/ <p>@littleredhairedgrl: Oh, that's one benefit to buying it from Amazon - you can buy one can at a time! I paid $155 for 4 and free shipping that worked out to be 2-day with the weekend and holiday added in. It arrives today! They have a program where if you order more than 1 case or do a recurring order you can get a discount. And not that you need more expenses, but I've heard that some people measure the scoops with a scale to avoid wastage. </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1844700 Tue, 02 Sep 2014 07:32:46 +0000 littleredhairedgrl 1844700@https://boards.hellobee.com/ <p>@spaniellove: we paid $40 and free 2-day shipping. how much did you pay? did you start using it yet? </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1844697 Tue, 02 Sep 2014 07:30:33 +0000 spaniellove 1844697@https://boards.hellobee.com/ <p>@littleredhairedgrl: How much was it compared to ordering from the manufacturer? Another bee told me how fast the free shipping was from the company and I found that it really is fast. We had the holiday and all but I think it ended up being almost overnight.</p> <p>Hoping the Neocate works for you guys and things ease up for you too!! </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1844683 Tue, 02 Sep 2014 07:18:49 +0000 ValentineMommy 1844683@https://boards.hellobee.com/ <p>@spaniellove: I'm so sorry you're going through this. You're in my thoughts &lt;3 </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1844662 Tue, 02 Sep 2014 06:51:59 +0000 littleredhairedgrl 1844662@https://boards.hellobee.com/ <p>@spaniellove: so sorry you're going thru this :( We are dealing with some major feeding issues with A too and just currently on day 4 of an elimination diet and so far it's helped. Also ordered Neocate off Amazon (expensive, but at least I could get it quickly) so we'll see if that works. Hoping it works for you as well. You're in my thoughts :heart: </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1842122 Fri, 29 Aug 2014 12:42:34 +0000 Mrs.Pinecone316 1842122@https://boards.hellobee.com/ <p>I just wanted to say I am sorry how frustrating this whole situation is and as a nurse who works with newborns I just can't believe how they aren't taking his feeding tolerance and growth more seriously. We always go with neocate over alimentum in my unit. Hoping you see a difference with it! I am surprised your insurance company didn't cover an apnea monitor.. I know sometimes they can be in short supply but if a physician finds it necessary then insurance should approve. You sound like one strong Momma, exactly what your baby needs. Hang in there :heart: </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1841846 Fri, 29 Aug 2014 09:34:44 +0000 artsyfartsy 1841846@https://boards.hellobee.com/ <p>I'm so sorry. That sounds unbelievably rough. </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1841801 Fri, 29 Aug 2014 08:51:21 +0000 twodoghouse 1841801@https://boards.hellobee.com/ <p>@spaniellove: I just want to send you love. You're doing the very best you can and it sucks that it seems like you're not seeing the best from the medical staff you've encountered so far. I hope the Neocate helps things and quickly so you can get his vomiting and weight loss under control! :heart: </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1841697 Fri, 29 Aug 2014 07:42:28 +0000 Mrs. Tiger 1841697@https://boards.hellobee.com/ <p>@spaniellove: I just don't understand! I hope you guys can come up with a better solution for his care soon, I know it must be incredibly frustrating. </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1841680 Fri, 29 Aug 2014 07:24:42 +0000 spaniellove 1841680@https://boards.hellobee.com/ <p>@beaker: They said a case manager looked into it and our insurance company wouldn't cover one for us. :bummed: </p> <p>I think we're going to go with the Neocate, because we need to do better than the Maalox. He is on day 3 of projectile vomit and I happened to get his weight numbers from when he was in the hospital. They should be ashamed of themselves. Only one person spoke up on rounds about his feeding and weight becoming a problem and everyone ignored him because it was all about making the attending happy. </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1841669 Fri, 29 Aug 2014 06:54:57 +0000 Mrs. Tiger 1841669@https://boards.hellobee.com/ <p>@spaniellove: gosh that sucks. Not to be a broken record but is an apnea monitor at home not possible? </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1841535 Thu, 28 Aug 2014 22:23:00 +0000 Vegmama 1841535@https://boards.hellobee.com/ <p>Oh my goodness. I can't imagine. You are so strong. Keep being strong mama. Sending so many good vibes your way!!! </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1841516 Thu, 28 Aug 2014 22:09:41 +0000 LovelyPlum 1841516@https://boards.hellobee.com/ <p>@spaniellove: I'm glad you're home but so sorry about the allergy and the exhaustion and the frustration. It sound like Neocate might be a good lead, though? I know it is nowhere near as serious, but I will say that I had a *completely* different baby when I eliminated milk from my diet. It helped so, so much. I hope a good change in formula might help a lot! :heart: </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1841026 Thu, 28 Aug 2014 17:57:04 +0000 ladybee 1841026@https://boards.hellobee.com/ <p>@spaniellove: We don't need a prescription for Neocate because we don't qualify for WIC. Since we were paying out of pocket we could just order directly from Neocate. M loved it so I'm not sure what they are talking about. Side note, ordering from Neocate, the formula shows up within 48 hours even if you do the "slowest" shipping.</p> <p>I walled you. </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1840982 Thu, 28 Aug 2014 17:02:29 +0000 brownie 1840982@https://boards.hellobee.com/ <p>@spaniellove: we never had a prescription and ordered directly from neocate website. Then took the difference as a tax deduction. </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1840960 Thu, 28 Aug 2014 16:34:46 +0000 Mrs. Jacks 1840960@https://boards.hellobee.com/ <p>Oh, and I thought this might cheer you up :)<br /> <a href="https://www.facebook.com/video.php?v=627935423938066&#038;fref=nf" rel="nofollow">https://www.facebook.com/video.php?v=627935423938066&#038;fref=nf</a> </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1840948 Thu, 28 Aug 2014 16:28:02 +0000 Mrs. Jacks 1840948@https://boards.hellobee.com/ <p>@spaniellove: there are more hydrolyzed formulas if he's still not tolerating the alimentum. They don't let babies go home until they've had no major apnea or bradycardia for 48 hours, so hopefully you'll be able to relax a little. </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1840914 Thu, 28 Aug 2014 16:01:14 +0000 spaniellove 1840914@https://boards.hellobee.com/ <p>@Seattlemom: I'm (finally) home now, but yesterday we sat down with a social worker from the cochlear program to work through all the layers of his care. We established that it's hard for me to see everything while it's in motion, especially when everyone is in and out and talking on top of crying babies, so I needed to get everything in writing. After we discussed that, she made sure someone put together a discharge plan in writing for me and we talked about it. There were things in it that I didn't agree with, but at least I could finally see what was what. </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1840908 Thu, 28 Aug 2014 15:57:25 +0000 Bao 1840908@https://boards.hellobee.com/ <p>I'm really sorry you're dealing with this :( </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1840903 Thu, 28 Aug 2014 15:54:10 +0000 spaniellove 1840903@https://boards.hellobee.com/ <p>@Mrs. Jacks: Something that was brought up repeatedly was that although according to the monitor he apnea &gt;30'd more than a few times, we weren't able to recreate what happened at home or what I hear at night at home. (Yikes, I slept through a lot of the alarms even when a nurse came to handle it and stood right next to me.) So their best guess was that his breathing is shallow, which doesn't help me, because they never told me how to handle it or how I'd know when it was happening if I wasn't totally lying awake watching him breathe. This was our main point of contention for days and of course they took from it that I was a nervous mom...what I meant was that I sleep very deeply and would like to continue sleeping. And I have so much going on that I don't have time to DIY his medical care.</p> <p>They didn't say anything about how to handle the milk protein allergy since he's already on Alimentum, but he's been on that for 9 weeks now and I feel like they should at least be open to a reasonable discussion about trying harder to eliminate the proteins from his diet.</p> <p>ETA: We did take a CPR class yesterday! </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1840898 Thu, 28 Aug 2014 15:51:21 +0000 lady grey 1840898@https://boards.hellobee.com/ <p>Coud you ask for a family care conference? So you can sit down with all your LO's doctors to go over everything in a comprehensive way? I'm sorry that there has been no resolution and you're feeling discouraged. It must be so frustrating. </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1840890 Thu, 28 Aug 2014 15:46:28 +0000 spaniellove 1840890@https://boards.hellobee.com/ <p>@MrsMccarthy: Unfortunately (or fortunately) they have an amazing cochlear implant program and we wouldn't go anywhere else. They've been so supportive about his hearing...it's just such a bummer about the inpatient stuff.</p> <p>@brownie: Is there a way to get ahold of Neocate without a prescription? The peds attending was going on about how bad it tastes and babies don't tolerate it, but this guy has been on Alimentum his whole life and loves it. </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1840885 Thu, 28 Aug 2014 15:40:06 +0000 Mrs. Jacks 1840885@https://boards.hellobee.com/ <p>I'm so sorry that it feels so fruitless. The good news (if there is a silver lining to the crap you've had to deal with) is: you know it's not<br /> -seizure<br /> -other brain pathology<br /> -central sleep apnea (important not to miss!)<br /> -obstructive sleep apnea<br /> -reflux<br /> -infection<br /> -chromosomal testing is pending</p> <p>This means that all the things that are likely to be an imminent threat to your baby are off the table for now. I know it's not a total answer, but should be reassuring.</p> <p>Also, in the absence of those factors, the risk of an ALTE event causing death are now nearing zero. Again, while not a complete answer, it should provide some reassurance.</p> <p>Do you feel like they didn't summarize and give you a plan of care appropriately?<br /> How about the milk protein intolerance? Did they provide you with a plan of care for that? Are you BF or formula feeding? If BF, did they teach you how to remove all milk proteins from your diet? I think CHOP has a great handout on this that I give to my patients. Is he on an elemental formula if he's on formula?</p> <p>Anyway, I know from my research that discharge from the hospital generally sucks. I can go into more detail about it if you like, but my research shows that families feel like they are discharged into the void with lack of adequate care plans and the paradoxical sense that things will magically get better at home. </p> <p>I'm so sorry that your experience has been so frustrating. </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1840867 Thu, 28 Aug 2014 15:30:07 +0000 autumnlove 1840867@https://boards.hellobee.com/ <p>I am so sorry that you are going through this. </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1840865 Thu, 28 Aug 2014 15:28:54 +0000 Cole 1840865@https://boards.hellobee.com/ <p>What a miserable situation! I feel like I remember you mentioning something before about being at CHOP (I will remove that if you want), is that where you were? </p> <p>Definitely give yourself a few days to resettle at home and reassess your situation (assuming it is non emergent). The exhaustion that comes with these things is unbelievable. Then maybe try reaching out to the social worker at the hospital to see if they can help you make sense out of your options. Maybe the right answer is to wait things out but maybe you will find that visiting another pediatrician can help get you guys on the right path.</p> <p>You should be so proud of yourself, caring for someone who is sick is really, really hard and when it is your newborn I am sure it is multiplied by a million. Get some rest and be gentle with yourself. Big hugs to you! </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1840853 Thu, 28 Aug 2014 15:23:28 +0000 brownie 1840853@https://boards.hellobee.com/ <p>I am so sorry that the doctors are not supportive. And that poor baby with no family. That is NOT fair to her at all.</p> <p>My story is no where near as traumatic. I do believe that the reflux meds hurt my son's weight gain more than helped because reflux was a symptom of his food allergy. I feel like for him, that it just made it even harder for him to digest his food properly. He was ultimately failure to thrive from 6 months - 18 months (when he could tolerate dairy). </p> <p>I did a total elimination diet and added foods back in so that I had more control over the situation. It was horribly tough. If you formula feed have you tried prescription hypoallergenic formula. I swear neocate (and neocate splash) did wonders for my little boy. </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1840851 Thu, 28 Aug 2014 15:23:05 +0000 MrsMccarthy 1840851@https://boards.hellobee.com/ <p>I'm so so sorry honey! Is there any possibility that you can choose another hospital? I really hope that your little guys health improves and you get a chance to enjoy him and live life normally again. Praying for you and your family! </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1840850 Thu, 28 Aug 2014 15:22:53 +0000 birdofafeather 1840850@https://boards.hellobee.com/ <p>:( i can't imagine the frustration and fear you have! i'm so sorry. </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1840848 Thu, 28 Aug 2014 15:22:42 +0000 .twist. 1840848@https://boards.hellobee.com/ <p>:( I'm so sorry. </p> https://boards.hellobee.com/topic/feel-like-its-not-even-worth-pursuing-medical-care-for-lo#post-1840847 Thu, 28 Aug 2014 15:22:19 +0000 Kimberlybee 1840847@https://boards.hellobee.com/ <p>Awww I am so sorry. Praying and hoping for brighter days for your family soon. </p>