https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Mon, 27 Apr 2026 09:03:07 +0000 https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2836288 Thu, 26 Jul 2018 17:05:21 +0000 Mrs. Tiger 2836288@https://boards.hellobee.com/ <p>@Ms. RV: congratulations, so happy to hear this!! :goodluck: :heart: </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2836202 Thu, 26 Jul 2018 11:31:10 +0000 pachamama 2836202@https://boards.hellobee.com/ <p>@Ms. RV: yayyyy that is great news!!! </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2836182 Thu, 26 Jul 2018 09:49:02 +0000 snowjewelz 2836182@https://boards.hellobee.com/ <p>Great news and so happy for your family!! </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2836116 Wed, 25 Jul 2018 21:36:06 +0000 jhd 2836116@https://boards.hellobee.com/ <p>@Ms. RV: yay yay yay yay yay! So so excited for you and your family! I hope everything goes just as smoothly as possible. :heart: </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2836093 Wed, 25 Jul 2018 19:40:55 +0000 erinbaderin 2836093@https://boards.hellobee.com/ <p>@Ms. RV: Hooray!!! </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2836092 Wed, 25 Jul 2018 19:31:05 +0000 Ms. RV 2836092@https://boards.hellobee.com/ <p>Eek!!! I don't want to jinx it but it looks like G is coming home tomorrow!!!!!</p> <p>His g tube was placed on Monday and I totally bawled when I saw him the first time with his NG tube removed because it had been the first time in six weeks I had seen his face with nothing on it. It is so wonderful to be able to see him and not be instantly reminded of his struggles. He also got to go to a regular recovery floor and not the cardiology patient floor because his heart looks so awesome!!! </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2833723 Thu, 12 Jul 2018 23:30:10 +0000 jhd 2833723@https://boards.hellobee.com/ <p>@Ms. RV: that’s awesome news!!! </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2833697 Thu, 12 Jul 2018 19:43:21 +0000 Mrsbells 2833697@https://boards.hellobee.com/ <p>@Ms. RV: :heart: </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2833688 Thu, 12 Jul 2018 18:03:20 +0000 Ms. RV 2833688@https://boards.hellobee.com/ <p>Whoo hoo! I have been approved for four additional weeks of paid leave without using any vacation time. G should be out of the hospital in two weeks, so I should have two weeks at home with him!!! This is also great because we are moving to a new house next week so I will have a couple of weeks to unpack. </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2832521 Fri, 06 Jul 2018 15:02:41 +0000 Ms. RV 2832521@https://boards.hellobee.com/ <p>@tiramisu: She is actually doing amazing. Her schedule is essentially the same M-F. It wasn't at first and she kept acting out. She seems to understand that G is at the hospital but will live with us some day. </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2832505 Fri, 06 Jul 2018 13:44:05 +0000 tiramisu 2832505@https://boards.hellobee.com/ <p>@Ms. RV: Glad they're upping his feeds! I know it's so hard and frustrating to want to help your baby but not being able to. I'd mention it to the nurse and doctors that you think he's hungry. I feel like it's good to be an advocate for him because you know him best and they might not be aware of some things. My son was also tube fed for a long time but sometimes his nurses would start his feeds a half hour early if he was clearly hungry. He didn't have CHD tho so I'm sure the drs have to be extra careful with volume/timing as you mentioned.<br /> How is your older LO doing? </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2832462 Fri, 06 Jul 2018 10:27:42 +0000 Ms. RV 2832462@https://boards.hellobee.com/ <p>@MrsScallop: @Mrs. Tiger: When the doctor from the main hospital main rounds today he said they were upping his feeds because he is not gaining enough weight. So I guess there was a reason he starts rooting an hour before feeds. They are worried about both volume and timing. Too much fluid will stress his heart since his CHD is on input (or so it was explained). Paci dips are actually PRN for speech therapy but he gets wise to it about five dips in. Hopefully larger feeds will help a little! </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2832442 Thu, 05 Jul 2018 21:48:22 +0000 Mrs. Tiger 2832442@https://boards.hellobee.com/ <p>@Ms. RV: same experience as @MrsScallop: that he was always tube fed and never displayed hunger signs. Is he allowed to have the paci dipped in (essentially) sugar water? </p> <p>I would bring up the fact that he's clearly hungry and ask for an extra bolus feeding (maybe smaller volume) they could order PRN so you could give it to him when he is hungry instead of on a strict schedule? </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2832432 Thu, 05 Jul 2018 18:56:38 +0000 MrsScallop 2832432@https://boards.hellobee.com/ <p>@Ms. RV: C has always been tube fed and I am not sure if he ever really showed hunger cues. The dietician and Nephrology team closely controlled his feeding schedule and volume due to his kidney failure, so I really didn’t question their directions besides trying to get him off a cow milk based formula or if I felt like he wasn’t tolerating a change they made. Are your son’s Drs more concerned about volume or timing? I would ask about ways to be able to feed your son sooner if showing hunger cues. My biggest frustration with the medical system is Drs orders and how little they can be changed as needed. I understand why, but it makes some aspects of parenting so difficult. </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2832418 Thu, 05 Jul 2018 17:48:13 +0000 Ms. RV 2832418@https://boards.hellobee.com/ <p>@MrsScallop: @muffinsmuffins: @Ajsmommy: @tiramisu: @Mrs. Tiger: @Mrs Green Grass: For those of you that had hospital stays, how were feedings handled? I have figured out that the biggest source of stress for me is that I can't decide when or how much G eats. Today, he cried (to the point of de-satting at times) for forty minutes because he was hungry. But any change in his feedings requires review by cardiology so they can't feed him when he is hungry earlier. Instead I am stuck comforting him (and not much does...) </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2832397 Thu, 05 Jul 2018 13:08:01 +0000 tiramisu 2832397@https://boards.hellobee.com/ <p>@Mrs. Tiger: Wow D is almost 5 already?? How is he doing? I know it's so weird how the NICU memories get fuzzy after a while, when at the time it was all consuming. </p> <p>@Ms. RV: Glad you got to switch to the nice room! I agree with @Mrs. Tiger, just keep putting one foot in front of the other. That's seriously how I got through it. Everytime I thought how am I gonna make it through another couple months it gave me anxiety. I really had to take it day by day. Dont put too much pressure on yourself to be there all the time. At the time my son was in the NICU, my older DD was barely 2. I tried to keep her schedule as normal as possible even tho it meant not being at the hospital as much as I could have been. :heart: </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2832186 Tue, 03 Jul 2018 18:17:16 +0000 jhd 2832186@https://boards.hellobee.com/ <p>@Ms. RV: just wanted to say hang in there!! It’s hard. I’m happy to see you got moved to a room with a better view. </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2832184 Tue, 03 Jul 2018 17:40:21 +0000 Mrs. Tiger 2832184@https://boards.hellobee.com/ <p>@Ms. RV: that's a great room! Very homey 😊 </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2832150 Tue, 03 Jul 2018 13:27:57 +0000 Ms. RV 2832150@https://boards.hellobee.com/ <p>@Mrs Green Grass: I made the decision to not set my alarm to pump at night. If I wake up I pump if not I don't. That has helped a lot too. OH's alarm goes off at 3:15 so if I haven't pumped by then I do it when he gets up. Last night was the first night for that and I woke up so much less disgruntled. </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2832149 Tue, 03 Jul 2018 13:24:10 +0000 Ms. RV 2832149@https://boards.hellobee.com/ <p>Yesterday I was chilling in G's hospital room when about a pint of water all of a sudden poured out of the ceiling and kept dripping. The nurse had us moved to a new room and it is soooooo much nicer. Spending three and a half weeks in here won't be nearly as bad. The window is four times larger and overlooks the road instead if the ambulance parking space.</p> <p>@Mrs. Tiger: I've learned to use his pump in thr past couple of days and it is so nice to do something for him besides diaper and pulse ox changes. </p> [attach=5855/18/pbaz4a.600x337.20180703_140838.jpg] https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2831970 Mon, 02 Jul 2018 23:41:54 +0000 Mrs Green Grass 2831970@https://boards.hellobee.com/ <p>I spent about 5 months in the NICU. I worried so much about feedings/pumping so that is probably something I would maybe stress less about. At a minimum go down to less pumps and supplement.</p> <p>I spent the largest amount of time cross-stitching a birth announcement. I also made footprints into Christmas cards for the nurses/family... I needed things to do that I enjoyed. </p> <p>Between feeding/diap r changes/eventually tummy time and play and then a little cuddle<br /> Before back to sleep I didn’t do much else than the cross-stitch!</p> <p>Good luck. I hope it to over as soon as possible and that lo is healthy! </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2831578 Sat, 30 Jun 2018 19:29:13 +0000 Mrs. Tiger 2831578@https://boards.hellobee.com/ <p>@tiramisu: you are so right! D was in the NICU for 2 months, out for 1, back in for 2. He's almost 5 now and a lot of the memories are fuzzy now.</p> <p> @Ms. RV: Hang in there! Just one foot in front of the other and try to remember that being there and being involved in his care is the best way to care for him even if its mind numbing 😜 I didn't stay at the hospital either because K was 2 at the time. I just read stuff (hellobee, news, kindle books) on my phone. </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2831566 Sat, 30 Jun 2018 16:46:41 +0000 Ms. RV 2831566@https://boards.hellobee.com/ <p>@tiramisu: Yikes. I can't imagine 3.5 months. DS has actually been out of the NICU since his heart surgery, he was in CICU and then step down and now he is in a 30 bed transitional hospital until his g tube. All of the rooms in his unit are huge so families tend to just stay in there. You are totally right about it being a distant memory some day. I never even thought that eight weeks is such a (hopefully) tiny part of his life. </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2831457 Fri, 29 Jun 2018 19:43:17 +0000 tiramisu 2831457@https://boards.hellobee.com/ <p>@Ms. RV: I'm so sorry you are going through this. Hang in there. Is your NICU single rooms? Do you have a primary nurse? My son was in the NICU for 3.5 months. Our NICU was one big room, so I was able to talk to other parents and nurses. I'd recommend requesting a couple of nurses you are comfortable with to be your primary nurses. It helps to have someone to talk to and who is familiar with your baby. Are there March of Dimes staff or other support systems the hospital offers? I hope your son is able to come home soon! It's a lonely and exhausting time with baby in the hospital. I spent every day eating lunch by myself in the hospital cafeteria in between pumping and his care times. One day it'll be a distant memory, I promise. My son recently turned 2 and at the time I never imagined I'd ever feel that way. </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2831424 Fri, 29 Jun 2018 16:33:37 +0000 Ms. RV 2831424@https://boards.hellobee.com/ <p>@periwinklebee: Thank you! :heart: </p> <p>@Dahlia: I am so close to just doing formula. I know I am definitely stopping pumping when I go back to work. I like the project idea. </p> <p>@Ms.Mermaid: I occasionally pump while driving. I love the idea of a coloring book. It is something I can work on and not feel bad if I never finish!</p> <p>@Alba4: April? I can't even imagine. </p> <p>@MrsScallop: Oh wow. 8 months is so long! We live too close to stay at Ronald McDonald, but even if we lived close enough I would be so hesitant to pull DD out of school. She thrives on interacting with other kids.</p> <p>@ElbieKay: Yeah... right now my self care is eating chocolate chip mini muffins while I drive. Definitely something I need to get better at.</p> <p>@muffinsmuffins: A big problem is everyone is at work while I am the hospital, so I can't really talk to anyone and no one is really available to visit. DS is also in the closest hospital for his care (we live semi-rurally). </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2831318 Fri, 29 Jun 2018 11:05:47 +0000 MrsScallop 2831318@https://boards.hellobee.com/ <p>@snowjewelz: ha, yeah, I am peeking in here once in a while again. :) </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2831229 Fri, 29 Jun 2018 08:07:44 +0000 snowjewelz 2831229@https://boards.hellobee.com/ <p>@MrsScallop: I almost didn't recognize your username :wink:</p> <p> @Ms. RV: I am so sorry, this is so hard! I'm just rooting you on over here :heart: </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2831226 Fri, 29 Jun 2018 07:56:00 +0000 Ajsmommy 2831226@https://boards.hellobee.com/ <p>I am so sorry you are going through this. We had a small hospital stay with DS when he was 10 days old. We ended up staying at the Ronald McDonald house and having relatives take turns watching older DD. The Ronald McDonald house was a life saver for us!!! I'd suggest looking into it if you have that option. </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2831217 Fri, 29 Jun 2018 07:34:16 +0000 muffinsmuffins 2831217@https://boards.hellobee.com/ <p>This sounds so incredibly difficult. I’m sorry you’re going through this. We only spent 8 days in hospital when my son was older and not in NICU so I apologize if this isn’t relevant or rules prohibit it: can you arrange regular visits from your parents/in laws/friends? Just so it breaks up the days for you? This really helped us to have something to look forward to. I also agree with the above about trying to figure out if you can move temporarily closer or transfer your little one...is taking leave from work a possibility? It sounds super stressful to juggle it all. What about DH? Is there a way to split things more equally and maybe switch to formula feeding? You’ve probably thought of everything but I know for me chatting with friends via FaceTime, visits from our family (we were able to have 2 people at bedside and my MIL stayed an afternoon while we both left to take a break) were extremely helpful. I hope he gets to come home soon! </p> https://boards.hellobee.com/topic/dealing-with-long-hospital-stay#post-2831194 Fri, 29 Jun 2018 03:33:57 +0000 ElbieKay 2831194@https://boards.hellobee.com/ <p>I’m sorry to hear about your son’s health condition and wish him a speedy recovery!</p> <p>I did not see anything in your post about self care. Can you carve out some time for that? Maybe find a couple of hours per week to focus on yourself?</p> <p>I know it’s hard. I barely did any self care during my son’s first year because I prioritized him. But in hindsight I think that was a mistake.</p> <p>I hope he comes home soon! </p>