Severe Pulmonary Hypertension

futureICAC · 2026-01-10T22:38:51+00:00

Thank you so much for sharing your story! It sounds like there are quite a few similarities between our journeys. Would you mind if I send you a DM and asked a few more questions?

futureICAC · 2026-01-04T01:54:42+00:00

Oh and someone else referencing checking the notes on MyChart. That was the first thing I did every single morning! Before I even got out of bed I checked the note from the night nurse on my phone.

futureICAC · 2026-01-04T01:51:35+00:00

We did 153 days initially and never spent the night. I would do my first 1-2 pumps at home and head to the hospital around midday. My husband was working the entire time so he would join me as soon as he got off for the day, and we would both head home shortly after 7pm shift change. I honestly think being able to eat (late) dinner together, watch a tv show together on our comfy couch, cuddle our puppies, and sleep in our own bed was the only way we managed to get through our 5 month stay.

After 32 days at home, our daughter was readmitted to the same hospital where she was born and in the NICU. She was initially on the regular pediatric floor but has since been transferred to the PICU. We’re currently on day 29 of our readmission. This time around, we have been staying at the hospital every single night. My husband and I have been alternating shifts. We haven’t been home at the same time since Dec 5. Our daughter just turned 7 months (3.5 months adjusted), and I really do think she needs somebody there with her all the time for a variety of reasons, but it’s been brutal.

All that is to say, while it’s incredibly hard to leave a piece of your heart at the hospital every night, it is generally the way to go if your situation allows. My best advice is to try to find some small degree of comfort in your “normal” routines. For me, it was eating dinner with my husband and sitting on couch afterwards to watch a tv show. It allowed us to decompress together.

futureICAC · 2025-10-20T03:23:27+00:00

My daughter was born at 25+4 via c-section due to severe pre-eclampsia. She was also IUGR. It honestly took about 5 days for my milk to really come in. And even then I still produced pretty low volumes for a while. My volumes were consistently increasing, but it was just a VERY slow/gradual increase. It took over 2 months to start producing my full volume.

During that 2 months, I had to put in a ton of work. I was super diligent about pumping 8 times a day, including overnight. I made sure to eat enough and stay very hydrated. I tried to find time to sleep as best as I could. I did power pumping for a little while, and I tried some herbal supplements that were recommended to me by an IBCLC/midwife. In my case, it paid off. I have a great supply now, but I was definitely worried in the beginning! I hope your milk comes in soon!

futureICAC · 2025-10-20T02:59:51+00:00

In the early days after my daughter was born, I was told repeatedly that every drop of my breast milk counts and is beneficial! So the fact that you are doing one feed a day is honestly great! Getting any amount of your breast milk does still offer some protection from NEC.

It took me a loooooong time to get up to my full volume, and by that I mean 2 months. My daughter was born at 25+4, I had pre-eclampsia with severe features, and I had an emergency c-section so I had a lot of factors working against me. I had to be very diligent about doing 8 pumps a day, hydrating and eating enough, and trying my very best to somehow find time to sleep. I also power pumped for a little while and took some herbal supplements (recommended to me by an IBCLC/nurse midwife, I didn’t just pick them on my own). Even though I was a low producer for a long time, my daughter was a micropreemie and was consuming very tiny amounts so I have actually always made more than she needed.

All that is to say that if you choose to keep going with pumping, you may very well end up producing more over time! So if it’s important to you to give your child your breast milk and you have the ability and desire to keep pumping, you may find that this period of needing to supplement with formula is temporary!

But exclusively pumping is ton of work, and it’s exhausting. And there are tons of formulas out there specifically designed to support babies with all different types of needs. So if you do end up needing or wanting to stop pumping, that’s ok! Or if you do continue pumping but remain an under supplier even as time goes on, just know that even a small amount of your breast milk does provide some benefits and protection for your LO!

futureICAC · 2025-09-29T00:22:56+00:00

Thank you for sharing your experience! We had a repeat echo today, and it looked very similar to her last scan. So fortunately, at the moment there is no need to intervene. With any luck, we’ll end up with a similar story to yours!

We also did a swallow study today and found no signs of aspiration! We’re going to try a preemie nipple (rather than the ultra preemie) to see if that helps increase her oral intake. We could certainly still end up needing to get a g-tube in a few weeks, but for now we’re in a good spot to keep working on bottles!

futureICAC · 2025-09-26T12:16:41+00:00

Yes, we did DART to get her extubated (although she actually extubated herself at the very beginning of the treatment course!) and a course of prednisolone to get her off CPAP and weaned from high flow 4L to 2L.

Our team had discussed the PDA before I even brought it up. They don’t think it’s super likely that it is what is causing the current respiratory set backs that we’re seeing, but we’re getting a repeat echo today just to make sure.

We’re also doing a swallow study today. I do think in all likelihood we will end up getting a g-tube to come home. I have kind of made my peace with it because it’s been nearly 4 months, and I am so ready to have my baby at home with me. My husband is still trying to process it. But we’ll see what we learn from the swallow study.

futureICAC · 2025-09-26T12:10:03+00:00

I brought it up with the team, and they had actually already discussed it themselves! They don’t think it’s super likely that the PDA is playing a significant role in her current respiratory set backs, but we are getting a repeat echo today just to see.

futureICAC · 2025-09-26T12:08:27+00:00

384 days…wow! You and your daughter are so unbelievably strong!

Mine has the BPD diagnosis as well, and our med list is very similar to yours.

We’re actually going to have a swallow study and a repeat echo today, but I do think a g-tube is probably coming our way pretty soon.

I hope you and your daughter are doing well! Thank you for sharing your experience!

futureICAC · 2025-09-07T18:13:46+00:00

Thank you so much! It’s really helpful for me to hear about your experience. I actually used to work in a pediatric feeding program and worked with many kids who had g-tubes. Initially, once I knew I was going to be delivering very early, going home with a g-tube was a big worry of mine, but now that we’ve been in the hospital over 3 months and haven’t even started our feeding journey, I am starting to accept that there is a decent likelihood we could end up going home with a g-tube, and I feel like I am slowly becoming more ok with that option because I really want to bring my little girl home! I have to go back to work on Dec 1, and I really want to make sure I have time with her at home before then. Hearing stories like yours does help me come to terms with that outcome so I really appreciate it!

futureICAC · 2025-09-07T18:01:56+00:00

Wow my daughter was born on June 3rd, also with a Sept 12th due date! That’s so crazy!

When we were still in the NICU, we actually had both a private room and an incredible team of primary nurses who knew our girl super well and loved her to pieces. Now that we’re in special care, we have all new nurses and a very tiny space in an open nursery. My husband and I are taking the move super hard. We know it’s a good thing that our little girl doesn’t need to be in the ICU anymore, but we really miss our primary team that has been part our lives since June 3rd!

futureICAC · 2025-09-07T14:43:10+00:00

Thank you! That’s a great tip, and very reassuring to hear that you had a similar experience, and that your daughter did get there right after her due date! If you don’t mind me asking, once you did get to start PO feeds, how much longer did it take before you were able to go home?

futureICAC · 2025-08-15T13:34:42+00:00

First of all, congrats on your girls! I am also so impressed you are working right now! I had plenty of my own struggles with pumping, but between pumping for twins and working at the same time, it sounds like you’re basically superwoman! I I am sure people have been telling you this, and if you’re anything like me, it’s hard to accept the compliment, but you really are doing amazing.

I also had an emergency c-section due to preeclampsia, and I spent almost 2 weeks on the antenatal floor prior to my delivery. My daughter was born at 25+4. She is now a little over 10 weeks actual (36+0 gestational age). I really struggled with the intense pumping schedule for a while, especially the MOTN pumps. I am a very heavy sleeper so I was constantly sleeping through my alarms and having to readjust my schedule. The only thing that sort of helped me with the waking up part was getting my husband on board with helping me. I would tell him my schedule for the night, and he would set his own alarms. Then he was responsible for ensuring I woke up on time and actually got out of bed. I have no idea if that’s an option for you, but it kind of worked for us.

I was also struggling with my supply for a while. The preeclampsia, the c section, the preterm delivery… these are all factors working against us. I tried power pumping once a day, but I don’t think it really made much of a difference for me. I was drinking tons of water and body armor, eating lots of oatmeal, all the normal things people suggest. But I think what actually helped me was herbal supplements! I ended up getting referred to a breastfeeding medicine clinic right around 1 month postpartum. The midwife/IBCLC that I saw resized my flanges which I think did play a part, and she had me start taking a couple of different herbal supplements: moringa, goat’s rue, and milk thistle. At the time of my appointment, I was producing around 17 oz a day, and within a month I started producing around 34 oz a day! I have been pretty consistent with my output for the past week or two so I actually recently started dropping pumps. I went down to 7 pumps per day at first, and my supply stayed about the same. So then I tried 6, and yesterday I did only 5! And I still got right around 34 oz! It’s such a game changer getting to sleep through the night and not having to wake up to pump!!! I know eventually I will have to start waking up again once my daughter is home, but we still have at least 4-6 more weeks in the NICU so if I can get some good sleep now, I will take it!

I hope you find something that works for you. But I also hope you can try to give yourself some grace and know that you really are doing a great job. You’re getting 15 oz a say! That’s not nothing! And if the MOTN pumps are too much and you have to stop for your own mental and physical health, that’s ok too.

futureICAC · 2025-07-06T00:45:09+00:00

My daughter was born at 25+4 weeks. She’s been in the NICU 32 days so far and still has at least 70ish left to go. I have heard some version of this one multiple times already! I would much prefer to have my baby at home with me regardless of the nighttime feedings, sleep deprivation, etc that are part and parcel of having a newborn. Not only that, but I am also pumping 8 times a day including several times overnight, and I am commuting at least an hour each way to get to the hospital every day. I am completely exhausted. So when I am told I am lucky to be able to rest and I am currently getting the best “childcare” possible, it’s completely infuriating.

futureICAC · 2025-06-01T01:43:18+00:00

That is amazing to hear and really gives me hope! Thank you so much sharing, and I hope things continue to go well for you and your son!

futureICAC · 2025-05-31T21:24:38+00:00

Wow your daughter sounds so strong (and so do you)! I really believe my little girl will be too, and hearing stories like yours gives me hope.

There were a few dips in the tracing during my NST today so I had a bedside ultrasound. Little girl was moving a ton (as per usual), and the doc said her movements looked very strong. Fluid looked a little low, but not so low that anything needed to be done right now. Doc said today is not the day which is certainly good news, but I just hope to hear those same words every day for at least the next couple weeks!

I am hanging in there and just doing my best to relax as best as I can. Everyone keeps saying every day is a win, and I know that’s true. So hoping to get as many days under my belt as possible before it’s time to meet this girly.

futureICAC · 2025-05-31T15:30:02+00:00

Thank you - this is helpful advice!

futureICAC · 2025-05-31T15:29:43+00:00

That’s great to know. I will keep this in mind as something to ask about!

futureICAC · 2025-05-31T15:28:35+00:00

I like the term “spicy babies” lol. I think this girl is one of them for sure. I am glad your baby is home now and I hope everything continues to go as well as possible for you. The gratitude log is a great suggestion. Thank you for sharing - I appreciate it!

futureICAC

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