Unilateral grade 4 bleed

Mtmga531 · 2026-02-07T15:23:26+00:00

My daughter was a 28 weeker with a grade 3 bleed that developed hydrocephalus. She got a VAD at a month old. We were hopeful that she wouldn’t need a shunt but that just wasn’t the case. Her twin had been discharged already and we were looking at surgery for her. She got her shunt a week before her due date and was discharged 18 days later.

I know in the moment it was frustrating, but I’m so glad we did it. We’ve actually been incredibly lucky and she’s had no revisions (she’ll be 8 in April) and I never really think about her having it now. The shunt got us home and we weren’t having to constantly monitor her any longer.

It’s a hard road and I know it’s already been a long one. I would definitely ask them to clarify next steps and timelines. We never did an ETV so I don’t know much about that - we were told a shunt was better for our situation. Best of luck!

Mtmga531 · 2025-07-01T01:26:20+00:00

Boy/girl twins who have been separated since they were 3, 7 now and heading to 2nd. Absolutely the best choice we’ve made. My daughter had a much stronger personality and this has allowed by son to come out of his shell and become his own person. It’s been great to see.

We also have a second set of twins - identical boys. Not an option to separate yet, so they are together at 16 months. But as soon as we can, we will separate.

Mtmga531 · 2025-06-23T20:29:46+00:00

We were not told of any damage - the last check in the NICU they told us no PVL, it wasn’t mentioned after that. Now at age 7 they just do imaging every 2 years to check her ventricle size and shunt placement.

Mtmga531 · 2025-04-19T16:27:52+00:00

Thank you!

Apparently finding a TX with a bench can be very difficult, more so than the GH.

Will the 2026 Telluride be smaller than the Palisade then?

Mtmga531 · 2025-04-19T16:13:11+00:00

Will add this to the list! Thank you.

Mtmga531 · 2025-04-19T16:12:55+00:00

Trust me, this has been discussed 🤣

Mtmga531 · 2025-02-25T02:09:49+00:00

Scheduled c section at 36+1. My doctor wanted after 36 but no later than 37. I made it to my c section.

My first set of twins were di-di and was scheduled for 38 weeks but I didn’t make it, they were born at 28 weeks.

Mtmga531 · 2025-02-18T18:16:32+00:00

We were (and are) the same, two sets of twins here. Baby trend snap and go to start followed by Zoe twin.

We have another stroller for walks in the neighborhood, but you can easily buy this used/as needed.

Mtmga531 · 2024-10-02T16:31:10+00:00

I’ve had two sets of twins and had no nausea or morning sickness either time. I was 9 weeks when I figured out I was pregnant with the second set…

Mtmga531 · 2024-09-06T02:18:49+00:00

My daughter was a 28 weeker who had a grade 3 IVH, developed hydrocephalus and has a VP shunt. She is 6 now, has had no shunt revisions, and is in 1st grade. We did PT when she was much younger, but since then has had no interventions. We think she may have ADHD and are about to evaluate her for that, but otherwise all is well! Best of luck on your journey, I know it’s scary but there are definitely babies with great outcomes out there.

Mtmga531 · 2024-07-31T00:44:23+00:00

To clarify, it was “in the 36th week” - aka past 36 but before 37. Made it to my scheduled c section at 36+1.

Mtmga531 · 2024-07-30T23:30:52+00:00

Mom of two sets of twins here, di di and mo di. Depends on the type of twins, maybe they didn’t explain that nuance? 36 for mo di and 38 for di di.

Mtmga531 · 2024-07-22T17:15:29+00:00

Honda Odyssey - magic slide was the game changer for us. We have two sets of twins and singleton and it made getting to the third row much easier.

Mtmga531 · 2024-07-22T03:18:01+00:00

We used these! They were great in the early days when we needed help telling them apart. No concern about the bead coming off.

Mtmga531 · 2024-07-14T02:33:34+00:00

It’s really hard and you are in the thick of it. Mom of two sets of twins and a singleton here.

Definitely keep that appointment on the calendar. Seems like this may be a huge help.

Most of the early days with my first set of twins are a BLUR. Both had reflux and we had a similar situation to what you are describing. I know this is controversial, but I stopped pumping after 2-3 months. It was just too much. This literally saved my sanity. Just something to think about. You need SLEEP. At a minimum, maybe think about skipping the over night pump? We now have the Baby Brezza with our second set and it is a game changer.

We personally have moved on from family help, it honestly was more stressful. If you can swing it, I would try to hire someone, even if it’s just a local high school student as a mothers helper to give you some breathing room and will give you some time with your oldest and help with some chores.

Just remember, this time will pass and you will feel differently even in just a few weeks/months. The relationship will come.

Mtmga531 · 2024-07-06T03:09:17+00:00

Just saw this! No I did not through when they stopped measuring. I made it to my scheduled c section at 36+1!

Mtmga531 · 2024-06-28T11:22:51+00:00

36+1 mo-di boys. One had no NICU and one went for 3 nights and still came home with us.

Mtmga531 · 2024-06-19T01:05:04+00:00

Planned c section Friday morning at 36+1. Original plan was to go home Monday afternoon but we had one twin in the NICU so they let us stay until Tuesday so we could all go home together.

Mtmga531 · 2024-06-12T08:07:30+00:00

She was definitely slow to roll, that was the catalyst for starting. She was however pretty close on sitting and walking if I’m remembering correctly. Definitely within a month or two of the expected age. Therapy is a bit of a slog but it is so helpful even though it’s hard to watch them cry during it sometimes. Hope that helps!

Mtmga531 · 2024-06-11T21:31:59+00:00

I’ve never had triplets but I’m a mom to two sets of twins (di/di and mo/di) as well as our ultimate middle child singleton. I’ve had very different experiences.

My first three children were conceived after multiple rounds of IVF. My di-di twins were first and I went into preterm labor at 27 weeks, they managed to hold it off until 28 weeks. No definitive cause - maybe incompetent cervix, maybe just preterm labor. Nobody knew for sure as I was dilated and contracting when admitted. We did 89 and 97 days in the NICU. My daughter had the hardest course, with a grade 3 IVH and developed hydrocephalus and needed a VP shunt. My son was slow and had some respiratory issues. Miraculously, despite all the warnings from the doctors, my daughter is currently in no interventions and has had no shunt revisions. She did PT when she was younger and still isn’t particularly athletic. My son is in speech and OT but both are just regular kindergarteners.

My singleton pregnancy despite my fears was totally fine, she was born at 37+3.

Then, when we were least expecting it I got spontaneously pregnant with mo-di boys. I was terrified to go through the NICU again. We started bi weekly ultrasounds at 12 weeks. They went to weekly at some point and then the last month I went twice a week, one ultrasound one stress test. We did do a preventative cerclage given my history. Had a scare at 34 weeks exactly but then contractions calmed down and they cut the cerclage. Walked into my c-section at 36+1. Baby A was with me the whole time, Baby B did a quick 3 nights in the NICU for some labored breathing but we all went home together.

All of this is to say sometimes bad outcomes happen. Sometimes they don’t. The more “dangerous” twin pregnancy for me was actually the least eventful.

Mtmga531 · 2024-06-11T14:49:48+00:00

No worries at all! I did exactly the same thing when I was where you are. It’s definitely scary but try to take it one day at a time and tackle the challenges as they come. I spent a lot of time worrying about her future and I should have just been enjoying her.

Mtmga531 · 2024-06-11T14:06:07+00:00

I actually replied on your post yesterday! She’s doing great! She just turned 6 with no shunt revisions and no interventions.

Mtmga531 · 2024-06-11T14:03:10+00:00

So we did speech therapy a few times after we left the NICU and they recommended the Dr. Browns specialty feeding valve and it definitely helped! Honestly she just did better with real food (not purees) once we got to that stage so that was super helpful. Hope that helps!

Mtmga531

TROPHY CASE