At risk... looking for advice, etc.

[zejh]

Hi, I guess this is sort of an intro, but sort of looking for "What you would have liked to know beforehand" kind of info...

I just found out at my most recent ultrasound that not only do I have low fluid, which had been the case in July, but that I have almost none now. I'm currently about 22 weeks. They're not sure if the fluid will come back or not yet, and it it kind of hinges on the placenta--it looks like it's at least partly on top of a fibroid I've had for years.

Anyhow, I'm posting here because there is a non-trivial chance that I might have to give birth very early, and even if I don't, there's a chance the baby won't be healthy even at full term.

I'm really in an annoying limbo right now--nothing much to be done except rest and get fluids (I might not have been as good as possible about the fluids, but I've been mostly resting nearly all summer since I had some major bleeding back in June) and wait two weeks for the next ultasound and hope the fluid comes back, and most importantly that the placenta starts cranking it up a notch.

Sometime in the next few weeks dh and I will start meeting with a perinatologist, too. I've been seeing a maternal-fetal specialist regularly already because of the fibroid and the bleeding (which hasn't been a problem since the end of June, thankfully).

I guess you could say my way of coping is just to find out as much as I possibly can before I go into anything. I've been reading research articles and various forums and such, and, basically, I'm looking for any advice you would have found helpful (or did find helpful) at this point in time, and any stories, particularly if you were in a situation like mine...

[ColoradoHELLP]

Wow - what a mentally and physically challenging position to be in. I wish you the best of luck with the remaining several weeks of your pregnancy. *hugs*

[zejh]

Originally Posted by ColoradoHELLP

Wow - what a mentally and physically challenging position to be in. I wish you the best of luck with the remaining several weeks of your pregnancy. *hugs*

Thanks. I just got back from another ultrasound. I'm now at 24 weeks. I'm pretty much on modified bedrest, but thankfully at home still. Today there was some fluid, which is an improvement. I've been drinking as much as possible lately, and dh and I think it's helping. The baby went from 20th percentile growth to 33rd percentile growth, so the placenta seems to be doing its job. The big question is still whether the lungs have had enough fluid to develop at the right time, but the specialist today said the window was from 16 weeks to 22 weeks, I think, and at 18 weeks there was still fluid, so I'm going to be cautiously optimistic on that. Unfortunately, they can't tell if the lungs have had enough fluid until the baby is born, so even if I make it full term, there's going to be that big question looming...

So, yeah, trying to be optimistic for now.

Oh, and I forgot to mention, they might want me checked into the hospital before 30 weeks. I'm hoping, at the very least, it's not *too* much before 30 weeks, and if things really improve, I'd like to wait as long as possible before going... We'll see...

[ColoradoHELLP]

Hey there...

Just thinking of you and wondering how things are going? Crossing my fingers that everything has been as boring as possible in the last month!

[sbrinton]

As a veteren of three pregnancies where I spent a total of 9 months on bed rest, both in the hospital and at home, the first thing I'd say is figure out what support you need to survive bed rest.

In my first pregnancy, I only had a month of bed rest. With no kids to care for, it was almost fun. Friends came to visit and brought food. In my second, I was on bedrest from 23-34 weeks. This was quite a bit harder, especially because I now had a little boy. In my third pregnancy, I was on bedrest from 13 to 31 weeks, the last month in the hospital. This was hard, especially near the end. By the time I was in the hospital, I was emotionally a MESS. I was trying so hard to hold it together and be strong, but on the inside I was falling apart. It was so hard to be away from my family, in the hospital, on terrible meds.

All of that to say - bed rest is hard, you will need love and encouragement and practical help - so make sure those things are in place.

To prepare for baby, can you take a NICU tour? Talk to a neonatologist or pediatrician about what to expect? I would read a few books about preemies and the NICU, or maybe try to find blogs from people who have had similar experiences to learn what they went through.

I would prepare practically too - have a small bag packed and ready for the hospital in case. Pajamas, lotion, toothbrush. Never know when you'll land there...

[zejh]

Unfortunately, I'm no longer in the wait-and-see phase of things. Thursday morning right after I woke up I was bleeding, and so dh and I went to the hospital to get things checked out. The baby looked fine and the bleeding seemed to be under control, so it was looking like I'd just be monitored maybe a day or two, but around 3:30am Friday, the bleeding had picked up again, and while the baby still looked fine, they decided they needed to do an emergency c-section (I was exactly at 28 weeks). Luckily, things had been set up for all the just-in-case scenarios while I was there Thursday, so I was able to get a spinal and epidural and be awake, and my husband could be in the OR with me. The surgery itself went about as well as could be expected (I'd already known that I'd likely need a classical incision because of the position of the fibroid--and they happened to have the hospital's fibroid specialist there, so she assisted with the surgery to make sure I lost as little blood as possible).

The baby turned out to be a boy, and the nicu people were working on him right away. We got to see him right before they took him to the nicu floor, and I got to kiss him on the forehead and my husband got to touch him. They told us he was very sick. We'd known there was a risk that his lungs wouldn't be developed. My husband stayed till I was stitched up and in the recovery room, where my mom was waiting (she'd flown into town the day before) so my husband went to the nicu floor to see the baby a bit--we still hadn't come up with a name. Things were looking somewhat ok--they had a respiratory specialist with the baby, and he seemed to be getting oxygen. A bit later my husband took my mother down to the nicu floor, and that time my husband got to touch the baby's head and legs while they were doing work, and apparently the baby calmed down considerably when he was doing this.

My mom had come back up to the recovery room while dh remained in the nicu. The plan had been that they would take me down to the nicu once I had stabilized, but then one of the neonatologists came up, and she said that it didn't look like the baby was going to be able to survive--too little lung tissue had developed, due to my water breaking so early on in the pregnancy (about 16 weeks) and the x-ray confirmed this, so she had gotten the ok from the ob's to take me to the nicu right away. This was about 5 hours after the surgery. There were a lot of people working on the baby when we got to the room, but they moved around so my stretcher could be put next to the baby, and he seemed to recognize me before I even said anything--I think I must have just smelled right. They put him on my chest, and he immediately reached his arms toward my face. After a short while, they removed the oxygen and the tubes, and he was either on my chest or being held by my husband until he'd passed away. They let us keep holding him as long as we wanted, and let him go back upstairs with me to the recovery room, since they still needed to work on me.

We decided to name him Joseph.

We're all doing about as well as we can, though I'm still breaking down crying every so often. I try to keep myself distracted as much as I can, not because I'm trying to suppress any feelings, but just because, with the surgery, it physically hurts if I cry too much. My friends and family have been absolutely wonderful through this, though, and I'm sure I'll get on somehow when it's the right time.

[Tellera]

I'm so sorry, my thoughts are with you.

[chel]

oh, dear. My heart just breaks for you

[Bokonon]

I am so, so very sorry for your loss. I wish you much peace.

[liberal_chick]

I'm very sorry for your loss.

[ouesi]

I'm so sorry for your loss. My thoughs are with you and your family.

[felix23]

Originally Posted by zejh

Unfortunately, I'm no longer in the wait-and-see phase of things. Thursday morning right after I woke up I was bleeding, and so dh and I went to the hospital to get things checked out. The baby looked fine and the bleeding seemed to be under control, so it was looking like I'd just be monitored maybe a day or two, but around 3:30am Friday, the bleeding had picked up again, and while the baby still looked fine, they decided they needed to do an emergency c-section (I was exactly at 28 weeks). Luckily, things had been set up for all the just-in-case scenarios while I was there Thursday, so I was able to get a spinal and epidural and be awake, and my husband could be in the OR with me. The surgery itself went about as well as could be expected (I'd already known that I'd likely need a classical incision because of the position of the fibroid--and they happened to have the hospital's fibroid specialist there, so she assisted with the surgery to make sure I lost as little blood as possible).

The baby turned out to be a boy, and the nicu people were working on him right away. We got to see him right before they took him to the nicu floor, and I got to kiss him on the forehead and my husband got to touch him. They told us he was very sick. We'd known there was a risk that his lungs wouldn't be developed. My husband stayed till I was stitched up and in the recovery room, where my mom was waiting (she'd flown into town the day before) so my husband went to the nicu floor to see the baby a bit--we still hadn't come up with a name. Things were looking somewhat ok--they had a respiratory specialist with the baby, and he seemed to be getting oxygen. A bit later my husband took my mother down to the nicu floor, and that time my husband got to touch the baby's head and legs while they were doing work, and apparently the baby calmed down considerably when he was doing this.

My mom had come back up to the recovery room while dh remained in the nicu. The plan had been that they would take me down to the nicu once I had stabilized, but then one of the neonatologists came up, and she said that it didn't look like the baby was going to be able to survive--too little lung tissue had developed, due to my water breaking so early on in the pregnancy (about 16 weeks) and the x-ray confirmed this, so she had gotten the ok from the ob's to take me to the nicu right away. This was about 5 hours after the surgery. There were a lot of people working on the baby when we got to the room, but they moved around so my stretcher could be put next to the baby, and he seemed to recognize me before I even said anything--I think I must have just smelled right. They put him on my chest, and he immediately reached his arms toward my face. After a short while, they removed the oxygen and the tubes, and he was either on my chest or being held by my husband until he'd passed away. They let us keep holding him as long as we wanted, and let him go back upstairs with me to the recovery room, since they still needed to work on me.

We decided to name him Joseph.

We're all doing about as well as we can, though I'm still breaking down crying every so often. I try to keep myself distracted as much as I can, not because I'm trying to suppress any feelings, but just because, with the surgery, it physically hurts if I cry too much. My friends and family have been absolutely wonderful through this, though, and I'm sure I'll get on somehow when it's the right time.

I am so sorry.

[bluewatergirl]

Emily, I am so very sorry for your loss of Joseph.
Joseph
There is a really wonderfully supportive group of Mamas
over at the pregnancy & loss boards.

[yogafeet]

Emily, I am so sorry that you lost Joseph. You did a great job for him being on bedrest. I am sending love your way.

[nummies]

I'm so sorry Emily. So sorry.

[Lousli]

Emily, I'm sorry for the loss of your beautiful son.

[alternamama82]

Oh Emily... I am so sorry from the bottom of my heart that it turned out this way... I understand all too well just how traumatic and devistating losing a baby is. Please allow yourself to grieve your loss of Joseph... And when and if you are ready, please come and share your story in the Pregnancy & Birth Loss forum. That place has been my saving grace in the past months.

[sept04mama]

I am SO sorry this happened to you. I also gave birth and said goodbye to my son on that very same day. He was 41 weeks, but was born with an undiagnosed condition that he couldn't survive. I am trying to recover and stop crying as well, I hear you on that.

I haven't done much on the birth and loss, but plan to soon and I'm sure it would help you too.

((HUGS))

[Amys1st]

Oh wow, I am so sorry for both of you mamas.

[ColoradoHELLP]

I am so, so sorry...poor Joseph. *tears*