If you or your partner was hospitalized for pre-eclampsia prior to delivering your little one, tell me about your experience

[zastaman]

@kimhimmel

1. I was admitted at 26 weeks after having been on blood pressure meds since 22 weeks already. I took 600 mg Presinol daily and continued to do so in hospital. I was monitored with daily NST 's, ultrasound every other day, blood pressure measurements up to eight times a day.

I delivered my daughter at 28 +4.

1. My blood pressure at admission was 150/100 ish. There were no kidney or liver issues at that time, also no protein in urine.
2. After a while my BP started to climb even on the max dose of prednisone (800 mg per day), I was given Nifedipin twice daily. Later, as the BP started to get out of control they gave me more and more Nifedipin every night. Also I was on a 24 h mag drip twice.
3. I could walk around as long as I didn't leave hospital grounds. I stopped going on walks on my own though as I became too sick.
4. Visits from my husband and the excellent monitoring I received round the clock. I reminded myself that I was in the best place to deal with my condition. It helped me to think that the responsibility for my wellbeing was in the hands of competent medical staff and I was not just on my own anymore.
5. /7. As my doctors put it, either my body gives out first or baby will become too distressed in utero. As it was, my body gave out. My BP started climbing uncontrollably despite meds, I developed the dreaded headache and swelling in my limbs and face. On the day of my delivery my bloodwork started to indicate beginnings of HELLP syndrome.
6. Planned C-section on very short notice (like, an hour passed between the decision to deliver and the C-section).
7. My daughter was born at 805 grams. We had hoped it would just be a little more, but she was severely IUGR and had not grown for the last two weeks.
   She was born screaming (I was told) and with a good apgar score. She started out on CPAP and the doctors were fairly pleased with her condition.

However, she developed sepsis on the second day of her life and barely survived the second night. She had lung bleeding, a second degree brain bleed and an open ductus venosus - the works. They even thought they saw white matter from the bleeding (indicative of CP).
She was intubated for 8 days and on CPAP for a further 30ish days. We were in NICU for seven weeks and a further seven weeks at a lower level preemie ward to learn feeding and to grow. We were discharged one week after her due date with an NG - tube.

We are in an early intervention program with her to catch any developmental issues ASAP. The doctors are fairly pleased with her development at this point but of course nobody will be able to give a long-term prognosis.
She is still very small and her issue was always that she could have been gaining more weight than she was. I assume the sepsis was a harsh setback in that regard as her body was working hard to repair the damage, she grew very little in the first three weeks of her life.

10./11. I pumped breastmilk for her and that gave me something concrete and positive to focus on. It was a miracle that my milk came in the way it did and I was so proud to be able to give her that. It made me feel just a little bit better when I generally felt very helpless and blamed myself for not providing her with a good environment while she was in me.

It also helped to focus on only one day at a time. I let to of all expectations after that terrible second night. I never thought about milestones or any date for discharge. Each day without a serious incident was a good day in our book.

I will also say, try to learn as much from the nurses as you can. I moved in with my daughter at the hospital five weeks before discharge to learn to feed her and take care of her. I learned so much about caring for her from the nurses.
Even in NICU, the nurses have a keen eye for the wellbeing of their patients and are able to catch a lot of subclinical symptoms before the doctors will see anything in a test. It was humbling to witness that and I am so glad they do the work that they do.

Finally, look after your own health even after baby is born! The focus will of course be on the baby, but don't neglect yourself. I had months of health problems after delivery and I needed to get help for myself even after discharge from hospital. It helped me that my mother was always firmly in my corner and looked after me when everyone else (husband included) focused on the baby.

Hang in there, and focus just on the immediate task at hand or just on the next couple of hours. Nothing is guaranteed so try to let go of expectations and focus on daily small wins. I'm rooting for you!

 

[kimhimmel]

@zastaman I am so sorry you had such a rough early go in the NICU. I’m glad things are looking up now. Great point about making sure someone is looking after your health postpartum, too.

 

[icthuslover]

@kimhimmel So I was supposed to just have an ultrasound and was admitted at 25 weeks due to blood pressure (171/95). They gave me labetalol (and another BP pill I'll have to check) that managed to get my BP down to 125/85. I ended up delivered at 26 weeks by c-section due to kidney function and fluid around my lungs. My placenta was too thick so it was pushing blood back I guess. They gave me a 2 hour notice so I could get my family to drive down.
The hospital let me leave for half the day during that week I stayed but I never felt good enough to go walk around for long periods of time. I was in a different city as well so I spent a lot of time alone, so I pretty much doom scrolled or watched Netflix. If you read I would suggest bringing a book or something to do other than look at a screen. I can't really say I kept sane, but they did offer social workers and counseling if needed.
Now we have a healthy 7m baby boy born at 680grams. He stayed 2months in the big city NICU and then 1 month in the hospital where I live.
Other than that, there was a couple ups and downs but other than that I feel most NICU families come out more resilient.
Also, keep all your parking and gas receipts for taxes. Some nurses let me keep a diaper and some of his CPAP hats, which was nice. Take all the pictures as well.

 

[kimhimmel]

@icthuslover Thanks for sharing your experience. Also some really good tips here about saving receipts, staying off screens. Thank you.

 

[misstuppence]

@kimhimmel I had preeclampsia. I had a routine office visit 2/14 (30w5d) where my BP was elevated. I was asked to return 2/19 (31w3d) for a follow up where my BP was 150s/90s so my OB sent me to the hospital. My BP spiked that night in triage to 160s-180s systolic so they admitted me and put me on a magnesium drip with the plan of staying until 34 wks to be induced (ideally, but they would induce earlier if needed). I started and finished my steroid injections for baby’s lungs. I also had bad headaches and a 24 hr urine collection showed elevated protein. All of this made them classify my preeclampsia as severe despite my bloodwork coming back normal. I had a growth scan that same day & baby was sitting at 40 percentile (was previously 70 percentile about 4 wks prior), but they weren’t concerned yet. I stayed about 3 days and signed an AMA bc I have 3 other kids who I couldn’t find childcare for, for 2 whole weeks. I was instructed to come back daily to L&D for labs and nst, had to sign and AMA each time I left. I had a growth scan 32w6d and baby was down to 20 percentile. I went back to L&D the next day at 33wks and was told my baby was being endangered due to my placenta possibly failing causing her to have growth restriction so I was admitted again. The next day (3/2) my BP spiked & I got a really bad headache so I was given labetalol and a magnesium, both barely helped. So 1am 3/3 my induction started and 45 hrs later she came at 33w3d vaginally.

I’m not going to lie, my first admission was a surprise and I went insane. The second time, I packed everything to make my anticipated long stay more comfortable.

When and if you get put on a magnesium drip, theres not much you can do bc you’re considered a fall risk. I couldn’t even shower while on it. I had to be escorted and monitored by a nurse in the nicu while on magnesium (up until 24 hrs after birth).

Babygirl weighed 4lb9oz with the cpap on.
She was off of cpap in about 2 days, on 2L nasal cannula for a day, weaned down to 1L for another day and has been on room air ever since. She regulated her body temperature in about 2 day I believe.
She had jaundice so she got the light therapy for 2 days.
The only thing she’s working on now is learning to feed at 34w5d (she’s on about day 4).

 

[kimhimmel]

@misstuppence Glad she’s doing so well! I can’t believe you had to navigate that whole thing while having to look after your 3 other kids. That seems Herculean. Wow.

 

[darknessb4themorning]

@kimhimmel

1. My first hospitalization was 28 weeks. It was just one day, my blood pressure stabilized and they sent me home on strict bed rest. My next hospital stay was 30 weeks and 4 days. I was hospitalized for 5 days. My blood pressure stabilized again, and again they sent me home on strict bed rest. Last and final hospitalization was at 31 and 4, and I had him that day.
2. The first two hospitalizations I was in the 160/110 range, my last was about 185/115.
3. I was not given any BP meds. I had a team of high risk dr’s and they all agreed that BP meds were not the solution. I wish I could have gotten them though, I took one labetalol (so?) 200mg post partum and my blood pressure immediately went down.
4. I was not allowed any activity in my 5 days. I wasn’t allowed to get out of bed, shower, I did 2 rounds of mag, and they kept the catheter in until I was discharged. They didn’t want me to get my heart rate up in any way and at the time, even standing or walking elevated my HR and BP.
5. This is the hardest by far. In a way, I think I was lucky to have it broken up into 3 different “stays”. I had minimal time to sit and be worried, it all just happened so fast and was kind of a blur. The only thing you can do is take it a day at a time- it’s out of your hands. You are doing everything you can by being at the hospital and following dr’s orders.
6. My liver and kidney were impacted, and I started leaking protein in my urine. I had a C-section that day.
7. C section!
8. 1550 (3lbs, 5oz)
9. My 31+4 was in the NICU for 9 weeks exact, 63 days. In hindsight, it was uneventful. He struggled big time with Brady’s and with his feeds. He was also on NIMV for almost 6 weeks which was much longer than most babies his age. It took him over 4 weeks to learn to eat. He’s 2 now, we’re in physical therapy for some minor physical delays, but he’s totally normal otherwise. He takes his time with everything, every milestone, so I think his leisurely stay in the NICU was just his first way of showing us his personality, it’s who he is lol.
10. The only advice I have, and if I could go back in time and talk to myself, would be to BE GENTLE WITH YOURSELF. Lower your expectations of what you “should” be doing or feeling. I blamed myself, I beat myself for not advocating hard enough, for not being in the NICU enough, for not healing fast enough from my c-section, for being so emotionally torn up for MY CHILD BEING IN THE NICU. I would have never in a million years treated another women, going through what I was going through, the way I treated myself. It’s a hard time, it can be easier to just throw all of your concern into your little one and push your own needs to the side, but you matter. What you need matters. What you are feeling is valid. It’s a marathon not a sprint. The love you have for your little one will get you through, but don’t be afraid to take care of yourself and ask for any help you need.

 

[kimhimmel]

@darknessb4themorning Wow, your hospital seems very outside modern standard of practice and all the international and national guidelines for treating pre-e. Incredible that you made it as far along as you did with such little appropriate medical support, you’re a champ. Can I ask what country you’re located in?

 

[darknessb4themorning]

@kimhimmel I’m in the US!!! In a major city, too. I actually got a second opinion, was seeing my normal OB, AND had the high risk team and everyone aligned that BP meds were not used to treat preeclampsia. They all said that would be treating the symptoms and wouldn’t prevent the impact to my kidneys and liver, etc. and by the time that happened it would be time to deliver, anyway. even at the time, that just didn’t feel right to me. I begged for them because I was so sure they would get me further along. Now hearing everyone else’s experience, I’m going to advocate even harder if I have a second.

 

[darknessb4themorning]

I’ll also note- I was seeing a cardiologist during my pregnancy, as well. After I had brought up the heart palpitations. She was the only one who offered BP meds! She was like see me again in a week and if your bp continues to elevate we’ll get you on them. That week would never come though because I ended up in the hospital where my ob and high risk took over my treatment plan.

 

[kimhimmel]

@darknessb4themorning Wow, yeah. If you ever do this again you DEFINITELY need to connect with a better care team. Even connecting with them prior to considering conceiving. I’m so sorry this happened to you

 

[ana83]

@kimhimmel Hi there. I also had severe pre-eclampsia. Admitted at 27w2 days. BPs were bordering like 150 top number. But there was lots of protein in urine and I was having severe headache and epigastric or upper right quadrant pain. They admitted me on bed rest and started giving steroids just in case. I had quickly progressive vision loss and vision changes which then prompted a spinal tap to look at CSF fluid pressure. When results came back too high, a troop of about ten doctors came in and said we need to deliver and over the phone asked if my hubby could be there in ten minutes. They did a quick ultrasound to find baby was breech so c section was decided quickly. C section occurred about a couple hours after this and I was on magnesium the whole time so I wasn't allowed to leave my bed. I delivered that night at 28w exactly. The thing that kept me sane, atleast for a little while was the constant monitoring of my baby. It was comforting to know that She was doing alright even though I felt like shit. I asked them to turn audio of her heartbeat up to give me strength. When she was born she was 2lb and 15oz which ig is rather large for this gestation. She was born not breathing and was resuscitated multiple times before she was successfully ventilated. She ended up only on the vent for a few days. I got to hold her for the first time on day four. Overall she spent 72days in our nicu and it was a bit of a roller coaster but she did so well and I was so proud of her. She discharged at about 4.5 or so pounds. For tips I would say take care of yourself. Do not feel bad if you need some time away from the nicu. It's emotional and tough. Lean on a partner or friend if you can. Know that things go backwards before they go forwards. A ove all, use your child's strength to fuel your own. Stand up for your kiddo and don't let other moms try to bully you into doing things that don't apply so much for a nicu baby. I had so many other parents belittle me for formula feeding for example which was just flat out ridiculous because she needed special high calorie formula for weight gain. My daughter is 3.5yrs old now, 40 pounds, and is the most energetic in her class. She reminds me everyday that miracles exist and strength comes in unexpected packages. You will get through this. Reach out if you need someone to chat with I am happy to talk.

 

[kimhimmel]

@ana83 Thanks for all this detail and sharing your experience. Things accelerated so quickly for you, what a brutally intense week you went through in the hospital. Glad everything has turned out well.

 

[zac595]

@kimhimmel At 31 weeks pregnant, I went in for a normal (high risk for connective tissue) appointment and my BP was so high (in the 150s), I was sent home with warnings "if you get a headache, if you feel dizzy etc etc, come straight to the hospital." Left the doctor and had breakfast, ended up right back, feeling super off, about an hour later. The doc told me to go to triage, my BP was 170/110. I was admitted. I thought okay well one night in the hospital won't be too bad, right? The SHOCK when I was told "you'll be here until delivery. What??? Probably at 34 weeks. Double what???." This scenario had never ever crossed my mind. I spent those few weeks anxious, hoping and praying to be able to hold my baby after delivery and not have to do any NICU time, but from what I saw scrolling (all I had to do), that was highly unlikely. I was bedridden until my BP was under control with a crumb of labetalol, then I had bathroom privileges, could go outside in a wheelchair for 30 mins per day, or could walk down the hallway assisted to get water. I think I asked every doctor every day if we really had to deliver early, but the high risk doctor called the shots and said look, going farther with pre eclampsia could harm you and/or baby. So I finally stopped living in denial and determined to just do it. They gave me cervidil on the day they began my induction, which started contractions so severe (1 min apart sustained) I had to get an epidural after a few hours and neber needed pitocin. Then, folley balloon (thankfully epidural so I didn't feel this). The folley worked within a few hours. I kept dilating and the baby came out after 8 minutes of pain free (but the hardest I had ever worked) pushing. Ps-all of my labor plans went bye bye. I wanted natural, upright squatting birth and ended up on my back with an epidural and no choice. Baby was fine when born but needed a little bit of oxygen, and after I held him for 60 secs, kissed him and he went up to nicu. They put me on a magnesium bolus that I had negotiated down to a 12 hour bolus so I could be wheeled up to my baby after 12 hrs. I was there with him 24/7 except for when my nurses called the nicu and said I had to go back down to get my own vitals taken. I was "discharged" after 3 days, but I didn't leave the hospital until my baby was out of nicu, which amazingly was only 10 (very blurry) days!

Edit: I had no elevated labs, my urine tests were normal. Part of my denial was bc I had NO OTHER symptoms of pre eclampsia. I had a history of POTS, which makes my pulse raise and BP drop upon standing, and this experience was causing the exact opposite symptom (elevated bp upon standing). The doctors ultimately said I was a mystery, but the high risk said high bp alone is enough to qualify for pre eclampsia. At one point I spent a couple days on the cardiology floor. Nobody could figure it out. As usual

 

[seadubb]

@kimhimmel I was already on the blood pressure medicines and aspirine starting from first trimester, because my blood pressure was borderline for hypertension before pregnancy.
At 31 weeks my blood pressure shot up to 160/100 so I went to PS and was admitted as even after my regular medicines it was not coming down.
I didn't have protein in urine at admission but I think it showed on the next check up (like 1-2 days later).
My pressure was managed with metildope and nifedipine but I constantly had spikes in blood pressure and had to take additional doses. At certain point it seemed like the blood pressure stabilized around 140/90, but it stayed that way only for like a week. During my stay the baby became IUGR but there was still good blood flow to the baby so they wanted to keep waiting. At 34+3 weeks my blood pressure started to go up again and my blood exams started to show there was an initial impact on my organ function (AST, ALT, LDH were starting to go up and thrombocytes were going down) so that morning they told me a C-section was the next step, and like two hours later I was being prepped. An induction was not an option as the baby was small and they wanted it out fast.
Baby was born 1800 g, breathing without problems and was brought to NICU.
I had another spike in blood pressure so had to stay for observation till the next morning under magnesium ev and other drugs for blood pressure.
Next morning I was brought back to the ward but had to stay in bed for a whole day and couldn't yet see the baby.
Next day (so roughly 36-48 hours from birth) they were finally ok with me leaving the ward to go see the baby in NICU. The baby stayed in an incubator for like maybe 3 days and then was switched to a thermal crib. He had to be fed through a nasal tube but there were no other complications and he was released after 3 weeks when the weight got up and he was able to eat from the bottle. They let me try to breastfeed after two weeks in NICU, but mostly I pumped.