Premature Birth/NICU Love Club

bobbyflies2020 · November 2016

Ok! I got permission from some of the ladies to start a thread for those of us who went into labor prematurely! Post your love and support here or share the thorns and roses of your day. I'll go first!

My current thorn is the fact that I'm currently day 22 in the NICU and am dying to see his feeding tube come off so we can go home. My rose is always my time breastfeeding Maxwell. I look forward to it every day and I love helping him with his latch.

AMack1216 · November 2016

My little guy was 3 weeks old on Thursday and was up to 4lbs 1oz at our first pediatrician appt on Wednesday. We have been home 6 days and are starting to figure out this whole parenting thing and have a semi routine established. My rose is being home so soon but my thorn today is we are struggling with feeds. He wants to take just enough to satisfy his hunger and then go right back to sleep. It's hard to get him to take his full bottle and I know he needs to take it all. I am pumping but don't have enough for full feeds so he's supplemented with formula. I do love seeing the daily changes and it amazes me that a 4lb baby can look chunky. His low was 3lbs 2oz so he has gained almost a pound.

bobbyflies2020 · November 2016

Yay for gaining almost a lb already! Good job Jeb! What did they tell you to do when you get home? What instructions did they give you about feeding on demand/according to a schedule? They want Maxwell to take 70 ML by mouth every 4 hours before they will take out the feeding tube. They bumped the minimum up from 60-70 last week..

AMack1216 · November 2016

@MBS2016 they told us to feed him every 3 hrs and to not let him go past 4. He normally starts stirring abt 30 minutes before he's scheduled to eat. I was changing him first and then feeding but just did a feed with changing him last and he seemed to feed better. He takes 40 cc's every 3 hours and pediatrician said it should increase to 50-60 by the time we go back in 2 weeks. We have had a few times where he has done 42-43 but those are rare. There are times we struggle to get even 35 in because he gets abt 15 down and wants to go back to sleep. From birth Jeb was 100% oral feeds. He never got fatigued enough that they had to use a feeding tube with him.

bobbyflies2020 · November 2016

Aww, it sounds like Jeb has really found a good rhythm. I think you dodged a bullet by never needing a feeding tube. Last night Maxwell took 75 cc's and they finally let him pull out his feeding tube and keep it out. My MIL and aunt both think their food minimums are ridiculous!! For a while they were insisting we change his diaper and meet his minimum in 30 minutes, too. It is just unrealistic.. Luckily it looks like we might have a chance to go home on Tuesday.

dmontgo · November 2016

So glad this thread is here!
My thorn is how much it hurts to leave Ashton in the NICU. I have to be cleared each day to even go see him because my BP readings still aren't stable. I get jealous of the nurses that get to spend all day with my son. I want to take him home so badly. He is a little less than 4lbs right now and so small and precious. I know it's not my fault that he is in the NICU...I know it's not my fault he is only 4lbs when other babies born around the same time are bigger...but I still feel guilt. I feel scared sometimes that he doesn't know who I am because he didn't see me as soon as he was born. Nonsense, I know...but I am mourning that first meeting.

My rose is seeing his face and when he looks up at me and smiles. He doesn't judge me...he's just happy to be in my arms.

AMack1216 · November 2016

We had a 30 minute limit on feeding Jeb too and it just stressed me out. Plus the nurses were better at feeding him than I was and I kept having to remind myself it's their job and I'm new at this.

@MBS2016 I so hope it works out for you to go home soon. It did wonders for me to be in a familiar environment.

@dmontgo I felt everything that you are feeling. I felt like my body failed Jeb and it was my fault he was so early and so small. It's okay to feel a little bit of Mommy guilt but focus on the successes and the times you get to be with Ashton. Once I was discharged I spent each day with Jeb but was away from him from 6p-9a each day and worried about a stream of nurses caring for him instead of me. But, due to no visitors during our imposed home isolation he doesn't have anyone else meeting his needs so I'm not so worried about the bonding anymore.

I have just tried to cut myself some slack and let myself feel what I'm feeling without letting it be all I focus on. Last night I realized that I won't get to experience the last few weeks of pregnancy and what it would have been like to go into labor and have a full term experience. And there is mourning that too but Jeb is here and I'm so thankful that I've had the chance to love on my son on the outside for the past few weeks. And I'm thankful for this thread too. Preemies and the NICU life is not for the faint of heart!

dmontgo · November 2016

@AMack1216 How did you keep up with pumping and breastfeeding for Jeb once you were discharged? I haven't been discharged yet but on one hand I want them to keep me longer so he's very close...on the other I hate being in the hospital! I want to spend as much time with him as I can. Fortunately I work from home but I'm still in bad shape. Hoping to find a solution where I feel like I'm bonding and helping Ashton get out of the NICU ASAP.

bobbyflies2020 · November 2016

@dmontgo It's so hard, I know. The first week in the NICU I felt so alone with my husband going through it all. I also blame myself and feel like I didn't get to experience the full 9 month pregnancy experience. But every pregnancy is different and each baby is different. Biology runs it's course and is out of our control. But I know it's hard. You did an awesome job and are a strong woman for going through what you went through. I really believe that.

DiFazette · November 2016

I hope you guys don't mind me sharing some love here - DS was born at 34 weeks as a preemie and spent about a month in the NICU... I empathize and cheer for each of you and your babies. It's something that will change you forever and there will always be a special bond with your nurses and other NICU moms.

@mbs2016 they are being strict with feedings! I'm glad the tube came out today. 70 oz is quite a bit!! Happy to hear there's movement. I was going to suggest you negotiate on oz and timing so the total feed over 24 hrs was the same but smaller meals more frequently. I don't think DS was taking 70 regularly for quite a while.

@AMack1216 Jeb sounds like he's doing great! We sometimes had to undress DS to keep him awake during MOTN feeds. We had to wake him and feed every 2 hours so I can't imagine trying to keep a preemie awake for a big/long feed!

@dmontgo as someone who walked a similar path as you regarding health - the BEST thing you can do is take care of yourself. I promise you will make up on he love and snuggles missed. Ashton needs you, your H needs you and having something happen to you isn't an option.

My son was born 3.5 years ago. I still have hard days about what we went through. I've let go of blaming myself but I still get sad about not having what everyone else gets. Making a photo book recently and seeing his first month of life in a hospital and me and h constantly with gowns on.... it stays with you. Know that you are all warriors. You are faced with seeing some really hard things from your first moments as parents to this child. Stay strong, it'll be a memory soon - but also let yourself have all the feels. Whatever you're feeling is valid and it's okay to hold your baby and cry. It's okay to go home and cry, I did every night pumping in an empty nursery.

Sending each of you and your sweet babies love, health and happiness.

bobbyflies2020 · November 2016

@DiFazette The support from the STM's on this board is so helpful ~ Thank you

AMack1216 · November 2016

@dmontgo I got discharged when Jeb was 4 days old and because we live 3 hrs away from where I delivered I was fortunate I had gotten a referral for the Ronald McDonald House so I was only 2 blocks away from Jeb. I have pumped every 3 hrs since I got discharged and I give him what I've got at the next feeding. It was recommended I continue to pump and bottle feed him when we got home due to we would need to monitor his intake amount. I tried to nurse him a few times but he's so used to the bottle he doesn't know what to do with the real thing.

@DiFazette after I was discharged I had a 2 block walk to get back to see Jeb. I was life flighted to the hospital where I delivered and the first time I was outside when a chopper came in there were tears and a little bit of PTSD like feeling of thinking how that had been us just a few days prior. There are parts of our stay I don't even remember so I need to take the time to write it down while it's still fresh so I can tell Jeb about it someday. Thanks for the encouragement that it gets a little better to process but that it's natural for it become a part of you.

bobbyflies2020 · November 2016

We just heard this morning that the NICU in Philadelphia has given us permission to do the 8 hour drive back to Boston! Having mixed feelings because of how quickly this is happening and the fact that we are leaving family. Any advice on a smooth discharge and words of encouragement are appreciated!

dmontgo · November 2016

@MBS2016 I don't have any advice but good luck!! Big things are happening and I am happy you have been told there is progress!

We were told today that they anticipate on taking Ash's IV tomorrow or the next few days! He is eating well and they won't believe he'll need it if he keeps it up! Got to spend some time with him this morning and I feel good about pumping. They are supplementing him with formula, which is honestly fine with me if that means we can take him home sooner. I'm happy with the progress I've been making pumping, and with a small increase each pump...that's really all I can ask for. Hoping to spend some more time with him later today.

BP is still high but they are talking about discharging me tomorrow with the condition I see the doctor within the end of the week. I am happy to think I can sleep in my own bed, but I don't want to be so far from A when I can't drive yet. Feeling better emotionally today than I did yesterday...Lots of crying!

AMack1216 · November 2016

@MBS2016 that's great news that you may be discharged soon. I told Jeb's doctor that I really wanted to go home but I was okay with waiting until they said he was ready to go. If they are okay with discharge then trust they are making a good decision for your baby too.

@dmontgo it sounds like our stories are very similar. I am still pumping every 3 hrs but still not producing enough for Jeb to be bm only. And I'm fine with a little formula too. I think maybe the BP meds they have me on may be affecting my supply or it could be that Jeb was never able to really latch and that impacted the process. I'll keep
doing this until it dries up I guess and every little bit he gets is better than none. Once I got discharged I think it helped my physical recovery because I had to get up and move and walk 2 blocks to get to Jeb. It helped me to shed some of the massive amounts of fluid in my legs and feet. I was fortunate I could walk to Jeb but I hope you can take the time you are home and Ashton is still in hospital to rest and catch up on sleep because you will need it when he comes home. In step down nursery the nurses have 3-4 babies each and I think Jeb knows he's the only one now and he is making his needs known with a lot more gusto than he did in the hospital.

dmontgo · November 2016

@AMack1216 Ugh the fluid retention in my legs is so bad. I'm walking around some but they look awful. I'm hoping they found the magic combination of meds in Aldomet and Labetalol but my pressure before dinner was 184/91. Granted I'm in pain still from the surgery and I was a little late for a dose but I'm hoping my legs will return to normal soon. It's hard catching up on sleep because the nurses and doctors wake up me throughout the night for vitals, not to mention I'm getting up to pump. Exhausted.

I went with DH down to NICU for a feeding and he latched and breastfed for 15 minutes! They removed his IV too, but then said that he probably won't be able to go home until around his due date or December 19th. It's like we made progress just to be told it will take longer? I'm hoping the lady was wrong.

AMack1216 · November 2016

@dmontgo what are the criteria for discharge for Ashton? Have they told you specific things they are looking for/he needs to do before they will send him home? That's great that he latched for you. That will definitely help increase your milk supply. Hopefully he will nurse like a champ!

dmontgo · November 2016

@AMack1216 They said he needs to be able to:

1. Regulate body temperature = check
2. Get off his IV = check
3. Weigh at least 5lbs = haven't completed yet
4. Regulate blood sugars = check
5. Pass a car seat test = haven't completed yet
6. Establish good eating habits = in progress
7. Breathe on his own = check

So he mainly has to gain weight. He weighs a little under 4lbs right now, but he's eating well so I'm really hoping it won't take a month and some change to gain a pound. He's been breathing on his own since the beginning and they tell me nothing is wrong, he's just a small dude. Of course there is concern over his immune system during the flu season as well but it seems to be a general concern of preemies over his specific development.

I know I'm impatient. Hoping to keep pumping and breastfeeding to help him reach those last goals!

ashleaf2018 · November 2016

My mom was an OR nurse for years, cardiothoracics specifically but she did do a rotation in NICU. She said generally they keep nicu babies until their original due date but it's certainly not uncommon for them to go home earlier if they are doing well. I hope all the D'16 preemie babies continue to do well and are on the fast track to being discharged. Y'all are some strong mamas, definitely thinking about and praying for all of you and your families!

ETA: your families, not our families

swhiddon33 · November 2016

Very happy to see this thread and to read such great progress. My Ollie is going on day 34 in the NICU and I can't wait to update y'all on his progress. Buttttt speaking of pumping....it's what I must do now.

AMack1216 · November 2016

Jeb's weight didn't have to be at a certain point to qualify for discharge. He weighed 3lbs 15oz at discharge. His doctor said most babies are 4.5-5 pounds but because he met all of his other benchmarks they let him go home. His other criteria were:
1. 100% oral feeds (he never had a tube so this wasn't an issue)
2. 48 hours in open crib and able to maintain his own temperature
3. 7 days off aminophylline with no increase in episodes of bradycardia (he only had one episode in 7 days)
4. 5 days with no apnea episodes

Thank goodness there was a little overlap in the last two. Jeb did 5 NICU nights and 13 nights in Continuing Care Nursery. The doctors commented almost every day that I was there for rounds that he was not displaying the typical Wimpy White Male Syndrome so I think that factored into us coming home sooner than expected.

dmontgo · November 2016

Ashton has been upgraded from the isolation NICU to the intermediate nursery, yay! But the nurses love him so much they are letting him stay where he is unless there needs to be room made. I don't mind as long as it's in his file he has been moved to a different category!

I got to change his diaper for the first time today and that was something I hadn't even thought about missing until his day nurse said I could do it. His little butt is so small!

Breastfeeding was a little frustrating today because he would latch but then just sit there or fall asleep. We added a nipped shield and that made a huge difference. He just needed help on finding something to latch to to suck since his little mouth was having a hard time with my huge nipples heh.

Been working on a no-sew blankie for him to have in his crib. Excited to have that done. I cry a lot but I'm trying to keep the positives in mind!

bobbyflies2020 · November 2016

@dmontgo I think they tell you the due date as might be your discharge date to try to manage your expectations. In my experience it is often half.

I regret not negotiating with them sooner about the feedings. We questioned them until they used the scale.

It sounds like he will be out soon. In the mean time rest and focus on yourself. The nurses understand and expect you to let them do his care. Good luck!

KatBH · November 2016

MBS2016 said:

@dmontgo I think they tell you the due date as might be your discharge date to try to manage your expectations. In my experience it is often half.

I regret not negotiating with them sooner about the feedings. We questioned them until they used the scale.

It sounds like he will be out soon. In the mean time rest and focus on yourself. The nurses understand and expect you to let them do his care. Good luck!

We've been told the same about discharge. To us it seems like Charlotte is making tons of progress and we should be out of here in two weeks or so, but they won't say anything other than her original due date of 12/24. One nurse told us they don't want to give us a date and then we can't go home for some reason, since its incredibly disappointing. I can't imagine being here for another 5 weeks, but I understand where they're coming from. Luckily we're able to stay just one floor away so visits and feedings are easy, but being away from home is certainly difficult (been here 2.5 weeks so far).

Luckily our babies are in the best place to get the care that they need. I keep reminding myself of this when I take a few hours here and there to actually go home and feel like a normal human being. It's only been 3 times so far, but the NICU nurses have encouraged it to keep myself sane.

dmontgo · November 2016

They discharged me today late this afternoon. It was very strange being wheeled out without a baby. One of the NICU nurses told me to rest and don't let guilt keep me from healing...that I don't need to be there around the clock to be a good mom. I needed to hear that, but I miss him so much. I'm trying to have a goal of healing so I can be the mom Ashton deserves. I can't be there for him if I'm hurt.

AMack1216 · November 2016

@dmontgo so happy to hear that you have been discharged. And the NICU nurse was right. Being with Ashton 24/7 isn't what will make a good mom. It's your love and concern for him. I stayed with Jeb during the day but left him at 5 each day so I wouldn't have to walk back to RM House by myself after dark. I felt bad about that until I realized some parents of babies that are in hospital for weeks on end only get to see their babies on the weekend because they have to go back to work. Ashton will be home soon and you won't have to leave him again.

dmontgo · November 2016

Sorry I keep posting in the thread so much but I don't know who to talk to IRL that would get it...and it helps me to talk it out.

I had a great visit with Ashton today! He's gaining weight and today his nurse said he had zero reflux episodes. They are starting to teach us how to take care of him and it's actually a lot less scary when someone teaches you instead of being sent home after 2 days and suddenly you have no idea what to do. I'm not happy he's in the NICU but there have been a lot of hidden blessings with him being there. It's given me a chance to heal and rest, but especially in breastfeeding support. They have taught me so much. They are also giving us a chance to room-in with him before he is discharged so we have a chance to spend the night with him to get the hang of it but with a nurse's support if we need it. Feeling grateful.

We do have to buy a different car seat though for his car seat challenge. We got a convertible one but he's too small for it. An infant one would allow us to have a cover on it as well to help keep germs out. Any suggestions?

Speaking of germs...for those that have been discharged, how do you handle visitors?

PensiveCrayon · November 2016

@dmontgo Don't apologize! I love coming here and reading your updates, and everyone else's. I secretly hope for more squish pics

dmontgo · November 2016

@PensiveCrayon Thank you for the encouragement and I wish I could hug you!

Here's a pic! He has the longest fingers and toes. He has a baby doll face. It looks like he *might* have red hair like his momma!

AMack1216 · November 2016

@dmontgo we went with the graco 35lx car seat and have liked it so far. It clicks into a stroller and we probably won't use it that way often but so far so good. I even took Jeb for a short walk yesterday and it was easy enough I could fold and unfold the stroller and put the seat in by myself.

As far as visitors go, we really haven't had any. My mom has stayed with Jeb twice for me to run an errand. My nieces and nephews saw him for abt 10 minutes but they breathed towards the ceiling just to be safe. A couple of church members have looked at him from a distance but other than that we have kept him pretty isolated. We just had the church prayer chain spread word that we were home but not able to have visitors right now. I think/hope most people understand.

dmontgo · November 2016

@AMack1216 Thank you for sharing. I actually just put a Graco 35xl car seat in my Amazon cart.

People don't seem to understand what the NICU means and the implications for preemies. It seems like they think that since he looks okay, there's no precautions that need to be taken. They're starting to get pushy---we had a friend who we really love text us that he was just going to swing by the NICU like it was no big deal. Ashton's nurse was clear that we can't take him out on the town and that only one or two people can visit at our house at a time sparingly but they must have shots and scrub their hands for at least a minute. She also said that if we don't want visitors we can say that the NICU said no visitors. Maybe selfish...but I don't want visitors. Ashton is so small and I get worried.

Toller · November 2016

@dmontgo I am too loving the updates!! it's great that you're able to start a nursing relationship too!!

Since I'm having twins, I bought infant seats that could handle small babies- Chicco Keyfit (starts at 4lbs).

I've also seen questions about the car seat test before in the Car Seats for the Littles fb group, and one thing to watch for when they do the test is that the car seat angle mimics what it will be in in the actual vehicle (I've read some NICUs just put the seat in a pack n play, etc) some people have brought in the base to set the car seat in so that it's correct. Just a thought!

I'd totally do no visitors if that's what your instincts say- Ashton will be here for a long time- people can see him later! no need to cause mama and daddy more stress than you've already lived through.

slartybartfast · November 2016

@dmontgo - I am also loving the updates. I am loving seeing how strong and perfect lil Ashton is. I would also decline to have any visitors around him at this point. Sorry folks. It's just what's best.

I have the Chicco keyfit 30. It's good. With DS we did snap it into the caddy all the time and used that as the stroller. We only just moved him out of it to prepare it for new baby so it lasted us a good solid while - though we have a little guy.

AbriannaO · November 2016

We got the Graco 35lx Snugride also! My friend had a very tiny baby and that was what she recommended because it fit from very tiny to 35 lbs.

bakerstreetboys · November 2016

Having a preemie was a whole new experience for me. I've never cried that much in my life. There was so much pain and worry involved, it definitely threw me off. Despite everything they were doing to me, the thought of what they were doing to Kai was almost unbearable. My poor baby had IVs in his feet, hands, and head, and had to undergo lumbar punctures. It took two weeks in the NICU for Kai, and 9 days in the hospital, plus twelve more days at home with a picc line inserted in my arm, both of us receiving IV antibiotics every few hours. It was hard to accept that my baby was so sick and that they didn't know what was wrong with him. They threw around possible answers such as meningitis; I have never been so scared. I was away from my other three kids and felt helpless.
Now Kai is three weeks old and home with us

For everyone with a baby in the hospital, just know that as hard as it is, there will be an end to it, and babe is receiving the best care available. Here's my big boy now

Sorry the image is so huge!
ETA: the bald patches are from where they shaved his head for the IVs

Image: https://us.v-cdn.net/5020794/uploads/editor/mj/eb4gf2skbtd0.jpg

bakerstreetboys · November 2016

@dmontgo I so get what you mean about people not understanding NICU precautions. Everyone assumed that because Kai was a big baby and looked healthy, he's not at risk. We've been home for a week and still haven't let people came to meet him yet. We just told people, sorry, hospital's instructions, household only for now. I have a giant bottle of sanitizer ready to go once we feel that we're ready to have people over. I know that people are insulted, but I really don't care

My baby's health isn't worth the risk!

dmontgo · November 2016

@JessCL Oh he is so precious. I'm so glad he is home now.

Today was a great day for Ashton and a hard day for me. He gained another 20 grams and is now at 1700 grams. He needs to be 1800 before they will consider him to go home, pending on other tests. He's breastfeeding so awesomely when I'm there, and they only have one wire attached to him now. He's such a good baby. I am so lucky.

Many tears for me today though. I just cannot stop crying. I feel jealous of some of our mamas here that their babies are healthy weights and they got to take their babies home. I'm so happy for them but my heart is breaking. I miss my baby so much. It feels like such a painful rollercoaster. Sometimes I want to throw myself on the ground and sob. I have never been much of a crier and this week I have made up for it tenfold. He looks up at me and it's just magic.

Removed picture

bobbyflies2020 · November 2016

@dmontgo Yay! Go Ashton and good job with the breastfeeding and doing his care. I complained about my frustration with the always changing rotation of nurses on the FB page... let's just say they made me cry twice, but a couple really were kind and helped us feel better. The NICU is such a place of twisted, conflicting emotions. Celebrate every benchmark, enjoy and document the positive experiences there and then mentally be prepared to leave. We were out of the NICU with a 5 hour notice. After being there for over 3 weeks.

You can do it mama! I'm glad he is doing well. Make sure you are getting the care you need as well.

cgss11 · November 2016

Creepy hugs for everyone.

We didn't have NICU time thankfully, but it's been terrifying being home. Everyone would tell us in one breath how she was doing fine and looked great, then with the next breath remind us she technically is a preemie, and these are the absolute must do's for feeding (which wasn't happening) and critical things to watch for the next few days, but then sent us home on our own! It is very scary/intimidating.

DH was ready to drive back to the hospital with her in the night last night, but we got through, and I'm hoping we are turning a corner.

swhiddon33 · November 2016

Hey mamas!

I am way overdue for an Oliver Update. See my sweet love? He is 6 pounds 5 ounces of adorable and has a Vulcan ear. He turned a month old last week.

My sweet sugar has been in the NICU for about 5 1/2 weeks and we are waiting on him to figure out oral feeds. It feels like it's taking forever and we are SO ready for him to be home. He has reflux which isn't helping. But feeding is the ONLY HURDLE LEFT. We are trying both bottles and breast and he is absolutely interested in both, but just can't seem to get the rhythm down.

DH and I are exhausted. We live an hour from the hospital so daily visits mean a lot of car time. I'm also pumping around the clock so sleep is scarce. We are becoming "pros" at this and I hate that. No one wants to become an old hat when it comes to preemie baby stuff. BUT. Staying positive is key. And we love our boy so much.

This has been the craziest ride of our lives so far but we know it will one day be a distant memory.

T&P to all of you!

dmontgo · November 2016

@cgss11 That is so nervewracking! There are so many things I'm learning about preemies. Today Ashton's nurse said that all of the "rules" about babies go out the window with preemies. Like about never waking a sleeping baby and such? You have to wake up preemies to eat! And how preemies feed differently! Information overload! But the coolest thing I've learned is that when a baby is born early, our bodies make a change to the breastmilk formula so it's designed specifically to develop their bodies faster like they are on steroids. Super cool!

@swhiddon33 Many hugs to you, Mama. Oliver is a cutie pie! Feeding seems to be the hardest thing to master. Ashton will have some great breastfeeding sessions, and then there are days like today where he will latch and then not do anything or just gum me and then smile ha. We had to thaw some of the milk I brought to make sure he would eat! Once it was in ths bottle he was fine, but didn't finish that either. I think he was sleepy from growing.

I know what you mean about the exhaustion. We are pumping around the clock too, and we're going to school, working, military responsibilities...I'm trying not to take leave until Ashton is home (I fortunately work from home). Then as you know healing from the CS and going to the hospital everyday (we are 30 minutes away). There are days where I'm very optimistic and positive, and then there are days where I just cry and cry because I miss him so. I knew I would love Ashton...but I was not prepared for the intensity. That keeps us going.

Want a personalized experience?

Premature Birth/NICU Love Club

Re: Premature Birth/NICU Love Club

Choose Another Board

Search Boards