unexpected complications « Back to Group Discussions

[autumngrey]

Here it goes .

History:

At our first midwife appointment we couldn't hear a heartbeat. I expected that outcome because of my tilted uterus and it was only 11 weeks. Midwife thought I seemed smaller than 11 weeks and ordered an ultrasound to confirm dates. First ultrasound showed us about a week ahead and showed some nuchal translucency. Temporary panic ensued, but DH and I agreed we didn't want to do any screening or genetic testing. The radiologist updated later that day that he didn't think it was nuchal translucency, so things calmed down.

Fast-forward to the 20th week anatomy scan. It was a very short scan. They told me to plan for an hour, and about 20 minutes into it the u/s tech declared us done. When we met with the midwife, she had nothing to say except that the scan was not good and that she thinks we should do an amniocentesis so they can decide where to refer me, but that best-case scenario it would be Down's Syndrome. She said the nuchal translucency they saw (and then said they didn't see but apparently did see) at the earlier u/s had increased and they observed a heart defect, which often means chromosome trisomy. Since I am terrified of needles, and under the "threat" that none of the specialists would see us without the amnio results, we had an OB do the amnio right then.

A week and a half later we finally heard back that the preliminary result showed normal, but the OB had no advice for what would be next. I was rather confused, and frankly quite angry that there had been such a commotion and then because our baby wasn't chromosomally abnormal, that everything was back to a-ok without any explanation.

3 weeks later I got a call to confirm my appointment with the perinatologist (surprising since no one told me what was going to happen, much less that they had scheduled an appointment for me 3 hours away). Of course I went, though! The following week I was in the perinatologist's office for a 2-hour long ultrasound and fetal echo-cardiogram. I could tell there was a problem just listening to the cardiologist and the u/s tech try to navigate baby's heart.

To the point:

In the end, they diagnosed

* enlarged right atrium and ventricle,

* leaking tricuspid valve (most likely a side-effect of the enlarged right heart),

* abnormally small PDA (possibly the cause of the enlarged right heart),

* ventricular septal defect (a hole, not too uncommon),

* fetal hydrops (edema/fluid accumulations around the organs and under the skin),

* and they were unable to see any fluid in baby's stomach, so he might not be drinking the amniotic fluid which would mean too much could accumulate and that lung development may be delayed. Or he was in a bad position and they just couldn't find the stomach? They did take pictures of it at 20 weeks so I don't know what's up with that.

The whole time they explained this all, I felt like I should be having more of an emotional response, but I just absorbed the information like they were talking about someone else. It was very strange. I'm pretty sure I even smiled at them as they dropped these bombs.

The heart stuff is all most likely treatable by drugs and/or self-correcting. In the event it's not, they likely wouldn't need to do any surgeries immediately upon birth. So really, it doesn't scare me too much. It sounds survivable. It sounds like a baby who will grow up getting to do all the "normal" kid things without restrictions.

The hydrops, though, is a sign of heart failure. I don't know how I didn't break down into a puddle of tears when the doctor told us this.

Then they proceeded to tell us that the edema seems worse than "just a heart problem" but since the typical causes (Rh incompatibility, chromosome trisomies) obviously aren't a factor, they don't know what it is and can't give any estimates of what may or may not happen. So they didn't tell me numbers, except to say that if baby is premature at all, he has little or no chance of survival. They seemed optimistic about what will happen if baby is full term. I Googled (always a mistake!) and it seems like 50% of babies diagnosed with fetal hydrops don't survive to birth. Why oh why did I Google??!

So I go back in 2 weeks for follow-up to see if the edema is increasing or holding steady. I go to my “regular” clinic (though I have to see the high-risk OB instead of my midwife now) for weekly ultrasounds to monitor baby’s edema, the amniotic fluid levels, and my overall health since fetal hydrops is associated with complications for mom. The perinatologist described concerns about developing maternal swelling and high blood pressure (or what sounds somewhat like preeclampsia).

If there’s an amniotic fluid over-accumulation (I have no idea what this would be called) they could have to do another amnio to drain the excess. In that case, they would have specimen to test. In the mean time, they don’t want to do another amnio just to be able to do more tests because of the risk to baby. Thank heavens!!

Transferring care:

Though there are good doctors available in town (two major hospitals) most of the perinatal specialists are here on a rotating basis (i.e. once a week or every-other week), so I have to transfer care down to the remote hospital 3 hours away once we get closer to birth.

It’s not too bad, since my parents live about 15 minutes from the hospital I will transfer to so I can stay with them for the wait. Most likely my employer will let me work remotely, and if they don’t I will just start burning through sick leave since I must have 4 or 5 months of it accumulated by now. At the follow-up appointment in 2 weeks I’ll get to find out what kind of timing they expect for the transfer, but I assume it wouldn’t be until after 35-36 weeks (if baby comes sooner, they will airlift baby or us both, depending if he is literally born first or not, to the remote hospital).

Emotional blabbley blah:

As much as I want this baby to stay in as long as he possibly can, it will be a long, long 2-5 weeks without DH in April and it makes me rather sad to think about. I especially feel bad for him, since he would be home alone whereas I would at least have my parents. Heck, I could even get to reconnect with friends I haven’t spent much time with since I moved these 3 hours away!

I also wonder about DH being there for the birth. I assume my chances for a C-section are increased with all these fun complications, and if it ends up to be by emergency and he can’t drive down in time, I don’t want to think about how scared I’m going to be in that darned OR. And even if it's a "regular" birth, as normal as one could hope for given the circumstances, his not being there with me until 3-4 hours into it is ... interesting to think about, at least.

Mostly right now I’m counting every single day. I don’t get out of bed until I feel baby move some. I don’t go back to sleep until I feel him move at night. He doesn’t move as much as he did a month ago, and it really, really, scares me. It scares me to the point I don’t want to buy any baby supplies at all. I have unsubscribed from most things that email me about anything baby-related because I’m afraid of having to see them if something goes really wrong. I’m trying so hard not to think about this baby not making it to April because I know it doesn’t help him at all, but it’s very difficult. I hope it’s just a phase, his reduced dancing. I kindof feel bad poking at him to make sure he still responds, like maybe I’m asking too much of him.

DH is somewhere between refusing to talk about it and insisting the doctors are overreacting and overmedicating the problem. He could be somewhat right--weekly ultrasounds do sound ridiculous.

But I know I’m not the first to go through this kind of scare. I'm trying to be brave, for me and for baby.

Hope hope hope hope  tranquil, unstressful, happy thoughts .

Oh, and a medal  (or flowers, there are no medals to be had on MDC emoticons I guess) to you for making it this far.

[jess in hawaii]

   

[zuzusplace]

Wow, I'm really very sorry you are going through this. I wish there was something I could say to make you feel better, but I know there's not. We will all be wishing the best for you, and any time you need to talk we will be here to listen. Big hugs to you!!!

[adoremybabe]

I too wish that there was something htat I could say or do to make you feel better. I don't know how you feel about praying and asking the Saint to intercede in prayer to God but the Patron Saint of Motherhood is Saint Gerard.

I am sure that you feel like you are alone in this but know that you have a whole slew of women here that will be thinking of you and praying for you and your babe. Keep us up to date.

Hugs.

[RosieL]

Geez that's a lot to navigate.  You've got some incredible strength and reserves to be able to be coherent and so on top of everything. I'm so sorry you're going through this, and also for the doctors and midwives that seem to be a little less on top of it than they should be. I hope you find one of the high risk or perinatologists to be great and trustworthy. It makes all the difference in difficult medical situations to have a doc you trust and have confidence in.

I doubt it'll be any consolation, but Odin has reduced his movement SIGNIFICANTLY. It used to be that if I paid attention for two seconds, I'd get a movement. I felt like it was like him saying "Hi!" Then last week it really reduced, to much less frequent and different types of movement. I think he had just finished a growth spurt. NOW I can barely feel him unless I'm in a great position and focus pretty intently. I'm 100% certain this is because he changed positions. 

Don't be hesitant to vent, cry, or anything else here. And if we can lend any particular kind of support (information searching, personal stories, or just e-hugs), let us know. 

[CarlyVHT]

I didn't want to read and not respond.

I don't really know anything about the complications you mentioned .... but I wanted to tell you that I understand where you are at, and I have been in a similar place. My DD (now 4.5) was diagnosed with unexplained IUGR - okay, a small baby, though no one could figure out why she was small. That was liveable. The part that wasn't was that her head wouldn't grow, her head/brain size was off-the-charts small, I barely had enough amniotic fluid to support pregnancy - and no one could figure out why or what the issue was. The only explanation was microcephaly (failure of the brain to grow) though they didn't know why, or how bad it might be. She could be a born in a vegatative state, or just have mild mental retardation. The perinatalogist (mine was only 1.5 hours away) confirmed the diagnosis, but couldn't find any specific abnormalities in the brain - so thought there was a small chance everything could be alright. Baby rarely moved and in order to try to carry full term, I was scheduled for NST 3x/week and biophysical profiles 2x/week, along with soaking in a pool 45 minutes per day to keep my amniotic fluid levels up enough to support pregnancy. She failed most biophysical profiles because she wouldn't move in there. Meanwhile, my relationship was completely falling apart - so much so that baby's father moved out 6 days before she was born.

I was induced at 38 weeks (after refusing an induction at 31 weeks) and gave birth to a team of 10+ pediatric specialists (pediatricians, nurses, brain people, etc) waiting for the baby to come out so they could whisk her away and figure out what the heck was wrong with her. An ultrasound the night before estimated her at just over 4lbs. I prayed she'd hit 5 lbs so I could take her home.

She was born a smallish, but healthy 5 lbs 14oz, 19 inches long. I pushed her out, they put her on my chest, did a quick Apgars, and the team all left. She was perfectly healthy - no issues at all. Scored a 9 on Apgars (highest possible at this altitude in Colorado). Her head was normal, and there was nothing wrong with her brain. She is a perfect, smart, totally normal 4.5 year old now.

I truly hope you will have a similar experience. Stay strong, Mama.

[sunflwrmoonbeam]

Autumn, ::hugs:: Have you looked into purchasing or renting a fetal doppler? It may put your mind at ease when he's being quiet. Mine was only $50 with free shipping and it helped me stay sane in the early days.

Also this baby isn't moving as much as he was earlier. I think that's pretty normal.

[chiromama01]

autumn, my thoughts are with you.  I know it's hard to think about being away from DH for the end of the pregnancy, but as a mama, you do what you have to do for baby, so take solace in knowing that you are being the absolute best mama you can be for your baby.  dh will survive the separation, and maybe you guys could work something out where in the last week or two he stays at an extended stay hotel maybe around the half way point, so that when you call him he could get to you quickly, or would it be possible for him to work remotely?  i'm sure you guys will figure it out.  lots of hugs xoxoxox

[prettyisa]

Hugs and hugs to you. I have no words, but please, don't feel like you need to apologize for writing about all of this. We're happy to be a place of support for you in all of this. I just hope for the very best outcome.

[NicMom]

Oh, hugs and more hugs.  Sometimes the road is long and difficult but you will get through it.  When things are really bad I try to remind myself that they won't always be this way and to take comfort in that.  Similarly, when they are doing great, I remind myself that they won't always be this way so savor every moment.  Life is always changing and sometimes we just have to let the waves carry us where they may.

If you aren't on the Brewer's diet I would get on it asap, especially if they are worried about preterm and high blood pressure.

[rik8144]

That all sounds so stressful. I am so sorry!

I will tell you though....my best friend suddenly gained a lot of weight around 32 weeks. She went in for an ultrasound and was diagnosed with fetal hydrops. Baby was born at 33 weeks weighing 7+ pounds! Lilly had some heart problems like you described due to the excess fluid. She was never transfered to the children's hospital here, her smaller level III nicu kept her there. She went home on her 1 month birthday. Today she is 4 1/2 years old and her only lasting problem is that she is more suceptible to lung issues (catches cold easily, asthmatic symptoms occasionally, lingering cough after colds). 

I work in a level III NICU and had always seen the bad side of hydrops babies. I was so scared for BFF and Lilly....but they taught me that not all hyrdops are created equal. 

I hope you have a wonderful outcome with your baby. 

[flavorfull1]

Hugs mama and of course we want to read it all and support you!  I am sorry that this is so much to navigate and so much up and down and unclear information.  Give yourself and DH time to process, like many different times. You may find that you have processed it all and then need to work through it again close to birth and after birth and even at 12 months or beyond. I am praying that your little one is safe and healthy and that you will carry to full term and that DH will be able to be at the birth with no added stress to anyone.  This is an intense time, be as gentle with yourself as you can be. I understand not wanting to be hopeful and that is something you will have to decide on when or if you are ready for it before the babe is born.  We can be hopeful for you and I do hope your little baby is perfectly fine.  Wish I could give you a hug.  It sounds like it has been a whirl wind experience and I hope that you will soon get some more laid out plans, answers, and expectations.  Keep us updated on everything, I will be checking and still praying.

[remark71]

That sounds extremely stressful and you are in my thoughts and prayers.  I wish there was more I could do say to make things better.  Just wanted to give hugs and wish you luck. 

[Aletheia]

Another family rooting for you and your bundle here in MT!  You should do everything you can to be nice to yourself.  I think all of us in the DDC give you complete permission to be completely self-centered and think of no one else but you and your baby.  Relax as much as you can, buy that something pretty you've had your eye on, and eat some chocolate.  Call lots of friends.  Take care of yourself.  

[dealic]

I am thinking of you every day and hoping it works out for the best for you and your baby. Please do feel free to vent, cry, talk or whatever you need here. We are all rooting for you and are here for you if you need us.

[tarabelle]

many hugs and happy thoughts for you and babe.

 

[Rasa]

Wow, that's a lot for you to have to take in--thank you for feeling like you could share that with us!  You are an incredibly brave and strong mama!  That's so sweet of you to be concerned for your DH, and I really hope it works out for you all to be together when the time comes to deliver, but please don't feel bad about shifting the focus to you and your babe--your DH can support you in so many ways, especially emotionally, even without being physically present.  Sounds like you have a great team to work with, sorry they aren't closer to you!  Perhaps you could consider finding a doula or birth support person in your parent's area who can support you.  I'm sorry, I don't know anything about fetal hydrous with respect to how that complication affects delivery options, but I did read a study that looked at groups of babies with heart defects or abdominal wall defects and basically, for those where the defect wasn't 'caught' ahead of time by US, they were more likely to have healthy vaginal deliveries, usually at a later pregnancy date (since no one knew to induce them) and had any required surgeries within a similar period of time to babies who had been diagnosed via US and had a c-section, and the outcomes for all the babies were the same, whether they had the vaginal deliveries or C-sections.  (I was reading that study because we were doing some risk analysis in case we didn't do any US, attempted a home birth, and had a baby which required some kind of surgical intervention.)  Like others have said, the further along in pg, the less movement will be expected (they're just running out of room!), but I know that can't help reassure you when movement means so much!  I'm still getting good results listening with my fetal stethoscope, which we got off Ebay for $15 or something, I feel like I miss a lot of movements if I'm not paying close attention and finding her heartbeat helps me feel better and I'm able to hear small movements that way as well.  Hugs to you and your family and feel free to continue sharing (or not!) if it helps you.  Will be sending your baby healthy and loving 'stay in there!' vibes.

[Thursday Girl]

autumn,  I am thinking of you and sending energy to your whole family. Never hesitate to share how you are feeling, we want to support you.  Hugs

[AnnaB77]

I will be sending positive thoughts to you and your little. As many others have said do not hesitate to share all your feelings with us. It is amazing how helpful it is and how wonderful and supportive our little group is. Many hugs to you!!

[rubyjune]

Love and light for you and your whole family. Keeping you in my heart and fervently hoping all those smart people with their fancy machines are wrong this time.