https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Mon, 01 Jun 2026 20:40:29 +0000 https://boards.hellobee.com/topic/chronic-care/page/2#post-1171516 Thu, 24 Oct 2013 12:10:49 +0000 Mrs Green Grass 1171516@https://boards.hellobee.com/ <p>@beaker: We were one week away from getting a g-tube (surgery was scheduled) and I was actually looking forward to it since feeding was so difficult! I hope it relieves the pressure and that you can get oral feedings down in the meantime. (And I hope you get out of there soon!) </p> https://boards.hellobee.com/topic/chronic-care/page/2#post-1171496 Thu, 24 Oct 2013 12:07:29 +0000 petunia354 1171496@https://boards.hellobee.com/ <p>@beaker: Great to hear! Having him home will hopefully be a huge morale booster. There's nothing like being able to snuggle your baby without the watchful eyes nurses and doctors ( as wonderful as they are!!) and millions of cords and alarms. </p> <p>Keep us updated! </p> https://boards.hellobee.com/topic/chronic-care/page/2#post-1171484 Thu, 24 Oct 2013 12:02:00 +0000 Mrs. Jacks 1171484@https://boards.hellobee.com/ <p>@beaker: That's great news! Humble apologies for not getting back to you on the other questions... I have been really sick and working ridiculous hours and didn't have time to contact my friend who would have the details on both facilities. </p> https://boards.hellobee.com/topic/chronic-care/page/2#post-1171431 Thu, 24 Oct 2013 11:48:17 +0000 lemondrop 1171431@https://boards.hellobee.com/ <p>@beaker: I've been wondering how you guys are too, glad to see a smiley face in your response!! We are all rooting for you guys! </p> https://boards.hellobee.com/topic/chronic-care/page/2#post-1171419 Thu, 24 Oct 2013 11:44:54 +0000 Mrs. Tiger 1171419@https://boards.hellobee.com/ <p>@wheres_c: lots of changes :) ill put a new post on this board soon. Long story short, he just underwent surgery for a g tube, and should be able to come home in the next couple of weeks, where we will work on oral feedings with him. Thanks for thinking of us! </p> https://boards.hellobee.com/topic/chronic-care/page/2#post-1171003 Thu, 24 Oct 2013 10:14:42 +0000 wheres_c 1171003@https://boards.hellobee.com/ <p>@beaker: I've been thinking of you and your lo. how is everything? </p> https://boards.hellobee.com/topic/chronic-care/page/2#post-1133170 Sat, 05 Oct 2013 08:29:08 +0000 Mrs. Tiger 1133170@https://boards.hellobee.com/ <p>I got some further clarification from the doc, as she is transitioning off of him, we get a new doc Monday (which is so frustrating!). Basically the thought is since he's 36 weeks, the NICU is not meant for long term care/recovery, and he may need to transition to a different facility to continue growing and progressing before coming home, not that he would never be able to come home. </p> <p>In the past week they put him back on a canula with room air, and on daily caffeine. Since then his desat alarms have gone down significantly, and he lasts several hours (like, sometimes 12+) without needing suctioning. I think that means he must be swallowing his secretions, at least some of the time. They did a swallow study which he failed, but the PT said she saw him swallow, so there's hope that he just needs some more time.</p> <p>Thanks again to all of you for your thoughts and advice. </p> <p>@MsMini: I asked about just taking him home as is, but they said he'd be too much to handle, especially since he still occasionally had Brady alarms needing moderate stimulation, which I guess the next step is CPR? So hopefully when he's ready to come home he'll be able to deal with his body better, I know we couldn't be alert 24-7 which is what he needs now. </p> https://boards.hellobee.com/topic/chronic-care/page/2#post-1118539 Sat, 28 Sep 2013 00:24:24 +0000 MsMini 1118539@https://boards.hellobee.com/ <p>He is very cute! I am glad you got some clarification, it sounds like you will just have to wait and see for a while, which sucks :( Sometimes these little guys just don't like to play by anyone else's timeline. </p> <p>The 24/7 aspect of maintaining his airway at home could be a lot to handle, especially with a toddler at home. I did respite care for a couple with a baby who needed lots of airway support (as well as continuous tube feeds, and a g-tubs), where I watched him at nights so at least they could sleep. That was expensive for them though, they replaced me with a full time live in nanny after about 8 months, so I am not sure how he progressed after that point. </p> https://boards.hellobee.com/topic/chronic-care#post-1118432 Fri, 27 Sep 2013 22:10:04 +0000 Mrs Green Grass 1118432@https://boards.hellobee.com/ <p>@beaker: is his bed at an incline? Dylan had desats due to bradys until he was past term. They increased when he started feedings, but eventually, slowly improved. Is there any indication of reflux or aspirating? Silent reflux can be hard to spot. Do the desats correlate with feedings in any way? </p> https://boards.hellobee.com/topic/chronic-care#post-1115115 Thu, 26 Sep 2013 19:49:23 +0000 Mrs. Jacks 1115115@https://boards.hellobee.com/ <p>@beaker: I hope it gets better too, but I think it's also wise to prepare in case it doesn't. This is tough stuff! I hope you run into your favorite doctor soon so that you can get a different perspective! </p> https://boards.hellobee.com/topic/chronic-care#post-1114797 Thu, 26 Sep 2013 18:45:39 +0000 Mrs. Tiger 1114797@https://boards.hellobee.com/ <p>@Mrs. Jacks: it depends. If he's being held (so he's more upright) he can sometimes last several hours. If he's on his own (and he's normally placed prone to help with this) it's probably more like once every hour or so, or if he coughs stuff up, he's unable to get it all the way out of his mouth and he desats. I know I would be/am most attentive... But how could we be hyper aware to that all the time, 24-7? I suppose everything else in our lives, including our 2 year old, would just have to take a backseat. </p> <p>I really hope this is all moot in a few weeks. </p> https://boards.hellobee.com/topic/chronic-care#post-1114641 Thu, 26 Sep 2013 18:08:50 +0000 Mrs. Jacks 1114641@https://boards.hellobee.com/ <p>@beaker: how often is he requiring suctioning? If its more than once an hour, that's pretty onerous, but I do know plenty of moms who do somewhat frequent suctioning at home. No one is going to better attend to your son's needs than you, right? </p> https://boards.hellobee.com/topic/chronic-care#post-1114494 Thu, 26 Sep 2013 16:54:02 +0000 Mrs. Tiger 1114494@https://boards.hellobee.com/ <p>@Mrs. Jacks: @Mrs Green Grass: DH and I talked with the doc today to get clarity. Her concern is not the feedings, its all the desat alarms, ie his (current) inability to deal with his own secretions. Everyones hope is that he will figure it out on his own time, but she wanted us to be aware that it was possible it would take longer than that NICU could handle, or possibly never develop at all. Sigh. </p> https://boards.hellobee.com/topic/chronic-care#post-1111845 Wed, 25 Sep 2013 23:57:50 +0000 MrsMccarthy 1111845@https://boards.hellobee.com/ <p>I just wanna send you a huge hug! I pray that your baby will be able to come home healthy. </p> https://boards.hellobee.com/topic/chronic-care#post-1111843 Wed, 25 Sep 2013 23:49:19 +0000 owlmom 1111843@https://boards.hellobee.com/ <p>He's beautiful. Keeping you, your baby, and your family in my prayers. </p> https://boards.hellobee.com/topic/chronic-care#post-1111818 Wed, 25 Sep 2013 22:50:41 +0000 mamimami 1111818@https://boards.hellobee.com/ <p>Prayers for you and that precious babe!! </p> https://boards.hellobee.com/topic/chronic-care#post-1111815 Wed, 25 Sep 2013 22:49:30 +0000 Mrs Green Grass 1111815@https://boards.hellobee.com/ <p>@beaker: anytime. For me it was mostly never! But typing was always easier. He's a cutie pie! </p> https://boards.hellobee.com/topic/chronic-care#post-1111732 Wed, 25 Sep 2013 21:46:22 +0000 Phillybaby2013 1111732@https://boards.hellobee.com/ <p>Omg he is so sweet. And to add another positive story - one of my coworkers has twin grandsons who were born at 24.5 weeks and they just turned 3. I can't say they had an easy road but they are now happy, and thriving amazingly cute little boys. </p> <p>I'll definitely be keeping you guys in my prayers. Hugs Momma! </p> https://boards.hellobee.com/topic/chronic-care#post-1111692 Wed, 25 Sep 2013 21:21:13 +0000 Mrs. Blue 1111692@https://boards.hellobee.com/ <p>@beaker: He is darling! Hang in there, mama! </p> https://boards.hellobee.com/topic/chronic-care#post-1111675 Wed, 25 Sep 2013 21:11:27 +0000 MrsF 1111675@https://boards.hellobee.com/ <p>@beaker: Thank you for sharing pictures! He is so perfect :heart: . I have been thinking of you and your family since your birth in progress thread. I haven't had anything helpful to add but I hope that things continue to get better for you and your little guy! </p> https://boards.hellobee.com/topic/chronic-care#post-1111667 Wed, 25 Sep 2013 21:08:34 +0000 immabeetoo 1111667@https://boards.hellobee.com/ <p>@beaker: he looks so healthy and happy!! no advice just positive thoughts your way. </p> https://boards.hellobee.com/topic/chronic-care#post-1111660 Wed, 25 Sep 2013 21:03:42 +0000 Mrs. Tiger 1111660@https://boards.hellobee.com/ <p>@Mrs Green Grass: I'll email you at some point in the next few days, I know you posted it on my wall. As you probably know some days it's easier to talk about this crap than others.</p> <p>To everyone else, just wanted to share some pics so you can imagine little boy as you keep us in your thoughts and prayers, which I honestly appreciate :) </p> [attach=1630/13/mtpn28.600x338.image.jpg] [attach=1630/13/mtpn2a.338x600.image.jpg] https://boards.hellobee.com/topic/chronic-care#post-1111654 Wed, 25 Sep 2013 20:55:16 +0000 Mrs Green Grass 1111654@https://boards.hellobee.com/ <p>@beaker: Please ask me anything you want, and give me your email if you'd rather talk there.</p> <p>I don't remember when the pacifier was started, but very early, probably before 32 weeks. (He was born at 25.) He was fed every 3 hours for almost the duration of his stay. At the beginning it would run over 2 hours, then they reduced it to 1 hour, then eventually about 45 minutes. He has severe reflux and spit up or brady'd if he got the milk too fast. </p> <p>We started non-nutritive feeding (dry breast) at 32 weeks and he did great with sucking. When we tried with actual milk, it was either too strong or too thin and he choked easily, so eventually I gave up. </p> <p>We worried that he just wasn't hungry either and twice we did a "sink or swim" where we took the tube out and let him call the shots. The first time did not work at all, but the second was much better. I don't think they would try that until your baby was near term. We also switched to a 4 hour schedule at a time, but the volumes were higher and so he was even further from finishing his bottles.</p> <p>We tried every type of nipple, rice cereal, feeding position, and eventually reflux meds and formula. His bowels were also a bit slow and a course of erithromycin sped everything up and helped with eating too. </p> https://boards.hellobee.com/topic/chronic-care#post-1111547 Wed, 25 Sep 2013 20:03:09 +0000 Mrs. Tiger 1111547@https://boards.hellobee.com/ <p>@Mrs Green Grass: oh wow, I knew your son was in the NICU for an extended period but didn't know why. Did your LO take a pacifier, and if so, do you remember when he started? Do you remember if he was on continuous feeding or every few hours via his tube? My husband is now thinking our son may not be motivated to suck/eat because he's not hungry, given that food is being continuously pumped into him. </p> <p>You've just given me so much hope, thanks a million :)</p> <p>If its not too personal, can I ask, did you return to work while LO was in the NICU, to save your maternity leave for when he came home? The doc suggested that to us and it hadn't occurred to me before. </p> https://boards.hellobee.com/topic/chronic-care#post-1111458 Wed, 25 Sep 2013 19:18:26 +0000 Mrs Green Grass 1111458@https://boards.hellobee.com/ <p>Also re: nurses, I had a very hard time getting primary nurses even though we were in a large NICU for nearly 5 months. But after talking to the charge nurses over and over, I got a little bit more consistency. The night charge nurse does the day schedule (at least at our NICU) so I never met her since she was on at 11. It would definitely be worth it to meet and talk to every single charge nurse so they at least know who you are and are more inclined to help you out. </p> https://boards.hellobee.com/topic/chronic-care#post-1111453 Wed, 25 Sep 2013 19:16:22 +0000 Mrs Green Grass 1111453@https://boards.hellobee.com/ <p>@beaker: Ok, then let me add that feeding was sooo difficult for us and was the ONLY reason we were in the NICU for so long. He started bottle feedings at 34 weeks, but would take 2mls or 10mls or 5mls, not nearly enough. At the beginning we only did 1-2 bottle feedings a day so he didn't get too tired. He almost always desatted during feedings either because he forgot to breathe or he choked.</p> <p>We tried a million different variations of how to feed, but eventually thickened feedings (we used Enfamil AR...even though I had plenty of breast milk...that's what he liked) and went ad lib (instead of a schedule). </p> <p>It was extremely frustrating, but eventually he came home and although he's not a big eater, he is consistently gaining weight at almost a year actual.</p> <p>I think it sounds extremely early for your doc to even mention chronic care as a possibility! 34 weeks is the earliest bottle feeding can even start. Give the kid a break! I wish you lots of patience and luck!! </p> https://boards.hellobee.com/topic/chronic-care#post-1111296 Wed, 25 Sep 2013 18:01:41 +0000 MamaMoose 1111296@https://boards.hellobee.com/ <p>@beaker: just want to give you more encouragement. You seem so knowledgeable about your LO's situation. Don't sell yourself short, you are certainly not "dense". You are doing such a great job for him at a time when you are both faced with some big challenges!! </p> https://boards.hellobee.com/topic/chronic-care#post-1111283 Wed, 25 Sep 2013 17:55:49 +0000 Pepper 1111283@https://boards.hellobee.com/ <p>@beaker: I'm so sorry you're going through this. You spend way more time with your LO than the doctor, and it sounds like he is making great improvements already! Keep being an advocate for your LO (which you're doing an amazing job at already!) and don't be afraid to seek out second (or third) opinions when the course of action seems "off". Hugs hugs hugs. I hope things continue to improve and your baby comes home soon. &lt;3 </p> https://boards.hellobee.com/topic/chronic-care#post-1111275 Wed, 25 Sep 2013 17:53:08 +0000 banana 1111275@https://boards.hellobee.com/ <p>Just wanted to pop in and say that I'm thinking of you and your precious baby! :heart: </p> https://boards.hellobee.com/topic/chronic-care#post-1111273 Wed, 25 Sep 2013 17:51:27 +0000 Ginabean3 1111273@https://boards.hellobee.com/ <p>thinking of you and your baby! :heart: </p>