Preeclampsia and NICU questions

[sweetcali]

Hi ladies! I don't belong here yet but will here shortly and I have some questions.

The low down: I am 30 weeks 2 days with a baby girl who has a tiny CCAM in her lung. I have been diagnosed with moderate preeclampsia and am currently on home bed rest as a ticking time bomb. The doctors have given me anywhere from 2 days to a week before things decline far enough to require delivery. We just found out over the weekend about all of this.

First: Anyone have experience with preeclampsia willing to share your story/tips/advice? Did your moderate pre-e stabilize for a few weeks?

Second: Baby is expected to spend a minimum of 5 weeks in the NICU. We did a tour (extremely overwhelming) and spoke to the doctors and nurses there. Can anyone give advice on how to better cope with this? Things you'd wished you'd done or known about?

Lastly, if there is a more appropriate place for these questions please let me know.

I appreciate any and all advice you can give me.

[motownthrowdown]

Fellow pre-e/nicu mom here. Welcome and sorry you have to join our ranks.

I was on bedrest for about 2 days before they decided to deliver. I was 28w0d, baby weighed 1pound 14 ounces at birth. Some things to push for: steroid shots. These will help baby's lungs develop a little faster. Check to see if you are GBS positive-i was but they didn't know, so baby got very sick. Altogether, spent 84 days in the nicu.

Nicu nurses are amazing resources for baby and for you. Get your money's worth and pick their brains about anything you ever wanted to know about babies. If they don't know, they will find out.

Hugs. Good luck. Feel free to PM me if you have questions or just want to talk.

[sweetcali]

motownthrowdown thank you. I am GBS+ and the Drs. know it. Also, I did get the steroid shots. Something that confuses me though, the steroid shots appear to be beneficial to mature babies lungs and I've also been told that it can stabilize my condition for the next 7 days but then they expect me to get worse and fast. I asked the dr why, if I make it 7 days, can't I have another round of steroids if it'll help baby and possibly buy baby another week in the womb by keeping me stable. He didn't really give me a solid answer other then that it would be experimental because they just don't do that. Do you have any info on why this wouldn't work?

[motownthrowdown]

sweetcali, the shots are "good" for about a month. I got one round when I was hospitalized in April for vague symptoms (they thought maybe pre-e, maybe HELLP) and then I got another round in May when I actually had my C Section. They also don't know the effects on baby when you constantly get them, so they try to do just enough to help. I've not heard of the steroids keeping Mom stable.

My timeline: I had weekly protein catches plus blood work from April-may. Everything slowly got worse until my protein hit 284 and they put me on house bedrest. That was a Monday. Went for weekly OB appt Wednesday and blood work was worse. Admitted to hospital for pre-e with very high protein levels and jumping BP. They put me on magnesium (ask about this for yourself) which protects mom from seizures and gives some neuro protection for baby). Mag made baby sleepy and my BP kept flying up, blood work getting worse. Emergency C Section Thursday. I went from feeling fine on Monday to needing an emergency section Thursday.

Some good things: you are being monitored. They know what's going on and they are watching you. Baby is 30w for you, which is great. I know it seems super early, and it is, but lung development for 30w is pretty decent. Girls do better than boys, because their lungs are usually better developed. Steroids make a huge difference. My 28 weeker did not need to be intubated and I give credit to the two rounds of shots we got. I saw some study that says every day you stay pregnant cuts three days off the nicu stay. The magnesium will make you feel absolutely terrible, but it will protect you and baby. My normal BP is around 105/65 and the last time they let me see it on the monitors, it was 189/120. I know it went higher, but I don't know what it went to.

Do you have a home monitor for BP? How are you being monitored?

[motownthrowdown]

Oh, another thing about mag. I don't have any memory of about three days in the hospital. The mag makes everything fuzzy. It's hard to explain.  I was coherent and actually had long, extended text conversations with people, but I don't remember it. Have someone take pictures of everything for you. Write things down to remember them later. 

[jense927]

sweetcali, sorry you find yourself here. I did not have Pre-E but as far as the NICU experience. Just make sure that you ask whatever questions you need to. That is what the nurses and doctors are there for. I am not sure if it is possible at your NICU but I liked listening in on the doctors rounds so that I could really know what was going on and from more of a doctor to doctor perspective since there is no sugar coating, which I actually liked. I hope you can hang in as long as possible and that you have a short NICU stay. Best of luck!

[wicked22]

Pre-e/nicu momma. At my almost 32 week appointment I went in feeling perfectly fine but by BP was off the charts. I was sent straight to labor and deliver where they said I had sever pre-e and that I would be having my baby in the next couple of days then told me not to cry when I start crying. I was on mag. from Wednesday evening 6pm ish till Saturday night. Its the definition of induced hell to keep to somewhat stablized. I got the 2 steroid shots and had Joseph at 32w 1 day vis cs on a Friday but my BP was still high which I'd why I was on mag. till Saturday. I didn't get to see my little 3lb3oz baby till Sunday morning almost exactly 48hours after birth, because your not allowed out of bed till your off the mag. The Nicu stay was tuff especially once released from the hospital. I always got one update a day from the doctor treating him either by phone or in person. The nurses were amazing there was only one i didn't like, they noticed and I didn't see her on his rotation again (i didn't say anything but like i said they noticed). I personally couldn't stay there all day but i made a schedule and was there for at least 3 hours every day. During that time i pumped, did kangaroo care and helped with daily care times and or bath time. He was there for 5 weeks. The hardest was always leaving him but i new when i would see him next which helped. Today he is a happy health boy that i feel is right between his milestones of adjusted and actuall age. He'll be 1 year in 2 short weeks. Good luck hun and know there is tons of support.

[theycallmekveld]

Another pre-e/NICU mom here. My pre-e was not properly monitored so by the time I found out about it it was too late to do much. But I know a few other pre-e moms who were able to go a few weeks!

As far as the NICU - it is overwhelming. But just take things one day at a time. Try not to look ahead at all five weeks at once - just take it a little bit at a time, as much as you can. Ask as many questions as you need and accept support wherever you can. And come find us anytime!!

[runningmommy519]

Fellow pre-e/NICU momma here. I was diagnosed with pre-e around 34 weeks and had ds1 at 35+1. My pre-e was stable though. He was born early due to a growth restriction that was probably caused by my pre-e. We spent 21 days in the NICU.

Everyone has given great advice so far. I'd like to add one thing. It's perfectly normal to feel sad and upset about being in the NICU even when your baby is doing so well. There will likely come a time when you will be upset that you aren't pregnant anymore. That you missed out on the last part of your pregnancy. Even months later when you are home and the NICU is a distant memory. You might start feeling sad. These are normal emotions. It took a long time before I could look at a pregnant women without bursting into tears. I get upset when people complain about the last few weeks of pregnancy. Especially those that "just want the baby out"

I should add that I just had my 2nd and had another hospital stay (for a different reason). I'm back to wanting to cry when I see pregnant people.

[jense927]

Hugs runningmommy519. I remember feeling that way as well. Also the moms leaving the hospital in wheelchairs holding their babies. Something only time can begin to heal.

[runningmommy519]

Sept 10, 2015 6:24:59 GMT -5 jense927 said:

Hugs runningmommy519. I remember feeling that way as well. Also the moms leaving the hospital in wheelchairs holding their babies. Something only time can begin to heal.

I remember a nurse who too care of me at 9 months pregnant. I ran into her leaving with her LO as I was coming back to visit DS2.

[jense927]

Sept 10, 2015 7:04:56 GMT -5 runningmommy519 said:

Sept 10, 2015 6:24:59 GMT -5 jense927 said:

Hugs runningmommy519. I remember feeling that way as well. Also the moms leaving the hospital in wheelchairs holding their babies. Something only time can begin to heal.

I remember a nurse who too care of me at 9 months pregnant. I ran into her leaving with her LO as I was coming back to visit DS2.

Ugh that is so tough! Sorry you had to see that

[fyoubumpmay]

How are things, sweetcali?

[sweetcali]

Thank you ladies for all of your input and advice. I'm sorry for not coming back sooner.

fyoubumpmay I delivered via emergency c-section in the very early morning of 9/8, less than 24 hours after I posted this. I woke up to severe epigastric pain and a BP of 190/112. Luckily, I didn't stroke out or have a seizure. Baby L was born at 30+3 and is currently in the NICU. She's doing well but not great. She is on a ventilator, is on a morphine drip, and has yet to poop since birth so we are stopping feeds. I'm a mess just trying to hold myself together. This is so hard. At first I could go home and sleep but too many things were happening while I was gone. Now I'm pretty much here all the time with one small trip home for a few hours every day. Sleep is elusive because I don't want to miss a thing but I'm getting to where I can sleep in between diaper changes. They said to expect to be here at least until her due date.
My MIL is staying at my house with my step kids and dogs. She is helping out so much and I don't know how I'll ever thank her.

Again, thank you for your input. If you have any more survival tips, I'm all ears.

[runningmommy519]

Sept 18, 2015 2:44:19 GMT -5 sweetcali said:

Thank you ladies for all of your input and advice. I'm sorry for not coming back sooner.

fyoubumpmay I delivered via emergency c-section in the very early morning of 9/8, less than 24 hours after I posted this. I woke up to severe epigastric pain and a BP of 190/112. Luckily, I didn't stroke out or have a seizure. Baby L was born at 30+3 and is currently in the NICU. She's doing well but not great. She is on a ventilator, is on a morphine drip, and has yet to poop since birth so we are stopping feeds. I'm a mess just trying to hold myself together. This is so hard. At first I could go home and sleep but too many things were happening while I was gone. Now I'm pretty much here all the time with one small trip home for a few hours every day. Sleep is elusive because I don't want to miss a thing but I'm getting to where I can sleep in between diaper changes. They said to expect to be here at least until her due date.
My MIL is staying at my house with my step kids and dogs. She is helping out so much and I don't know how I'll ever thank her.

Again, thank you for your input. If you have any more survival tips, I'm all ears.

Congrats on the birth of your sweet girl. Please make sure you are taking care of yourself. Your little girl needs you healthy. I know it's hard to leave her.... So very hard because you are her mom and you are suppose to be the one caring for her but it's necessary sometimes. If there is one thing I learned from two hospital stays it's that I couldn't be there all the time. As much as I wanted to be it was better for my mental health to not be there all the time.

The NICU is a roller coaster. Time stops. There are going to be ups and downs. Lows and highs. Right now, you are experiencing a low point.

As much as this sucks. I promise that one day you will look back and realize how strong you are. You will realize how this experience made you a stronger mother. You will appreciate so all the little things that so many take for granted, like pooping or crying.

hugs to you.

[jense927]

sweetcali congrats on the birth of your daughter!

The NICU life is so rough. Try not to be so hard on yourself. She is in the best care possible. I know its easier said that done but you need sleep too!

As for tips for survival, I don't have much. That's pretty much where I was at as well. Just survive the day and move on to the next one. One day it'll just be a memory. Sending you my thoughts and prayers and hope you guys have a smooth journey from here.

[fyoubumpmay]

sweetcali, first off, congrats on the birth of your baby!

Secondly, the NICU life is a roller coaster and an insanely tough experience. I couldn't be there but for about an hour a day, because I also had a 10.5 month old at home when the second was born, so I experienced allll the guilt. That said, like pp's said, you really need to take time out of yourself. I ended up sinking into a deep depression at one point, and what really really helped me was taking as many date nights with my husband as possible. After 3 in a row, I came out of my depression and fared much better from that point on. Sleep is also crucial, because sleep deprivation can also lead to depression as well. So while I know that you don't want to leave your child, trust and believe that she's in the best hands possible and that you won't be doing anyone any harm by allowing yourself to get some rest. Beyond that, just know that there will be improvements, as well as periodic setbacks. It's the nature of the game, and you have to try your best not to get discouraged. My daughter had 2 failed attempts at feeding before her system finally began to tolerate it. She came off the phototherapy lights and bill blanket, only to spike again and have to go back on. And there were some days where her A's and B's were minimal in number, and others where they seemingly wouldn't stop. But sure enough, she continued to improve over time, and after 44 days, she was finally released at 35 weeks exactly (she was born at 28 weeks 6 days). We too were told to expect to be there until her due date (possibly after) and ended up being released 5 weeks prior, so think positive thoughts and don't give up hope!

If you want to talk about anything at all, please feel free to PM me, as I literally just went through all of this (baby girl was born July 1st and came home August 13th; her due date was yesterday!). Or if you're not in the mood to talk, but would like to read more about my experience (with a little comedic relief thrown in for good measure), you can check out my blog, where I talked a lot about what we went through. Either way, best wishes to you and your beautiful family!

http:/www.mordantmom.com

[motownthrowdown]

Take care of yourself. Pick some primary nurses ASAP. I wish we had done this sooner. The nurses are taking care of your baby, but they are a great source of support for you too. They get it (whereas family and friends won't, no matter what they say). You don't get it unless you've been there.