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January 2018 Moms
libbberty
member
Update - Possible TW
libbberty
member
Ladies, not sure this is the right place to put my update, but wanted all of you to get my news - started putting it in Randoms but felt like that would hijack the thread. Copying and pasting mostly from a friends and family email, so sorry if info is too much/not enough in some places. Heading in at 3pm today for our next appt.
**Possible TW**
**Possible TW**
I went in for my 28-week appt on Monday and I was growing too fast – too much amniotic fluid, too much weight gain, etc. I had a feeling I was measuring more like a month later, and I was right. Lesson: Moms know - when in doubt, get scanned, advocate for yourself. So, I got a growth US and we found some fluid inside the baby near its chest and bowels, in addition to extra fluid in my uterus (so baby has more room to flip and move, and I have extreme discomfort because it’s like I’m 36 weeks pregnant but my uterus is still catching up). It means the baby isn't processing amniotic fluid, possibly because it's unable to swallow or something else is going on. Fluid should not be in these locations in the baby, so I was admitted to the hospital and sent to the maternal risk team for monitoring and investigation. We didn’t know much leaving the hospital Monday night except that the baby’s organs (the ones we could see) were all growing as they should in size/structure, and the heart is operating as we expected at that point (from what we could see). The implications of the fluid could result in many very, very poor prognoses. It’s called hydrops.
Skipping ahead, Tues morning I had an US with the MFM team and we found a suspicious mass in the chest cavity that is pushing the heart’s location (mediastinal shift), and we couldn’t see well what impact it had on the lungs. We also had a fetal echo (heart detail) that revealed the heart had the structure we were aiming for, and it seemed to be functioning well from what we could see. Together, these results pointed towards a diaphragmatic hernia (which would be an awful scenario with threatened survival). It looked like it would be severe because we thought the mass may be the liver protruding into the chest (i.e., close to a worse case scenario for this type of disease, called "liver up") and because of that fluid. So, the next step was a fetal MRI to get a better peek at the mass.
We had the MRI and all sorts of other tests and got a call while I was getting steroid shots (to promote baby lung growth) that the care team was ready to go over my MRI (at 6pm). We were ushered into the fetal institute where we now have a “nesting room” and full care team. It was very scary but we’re confident we have great care at Northwestern.
The care team (MFM, neonatologist, fetal surgeon, social worker) reviewed the MRI with us and we found out some interesting news that was slightly “better” than the previous (despite still being plain old awful). We were told the baby has a bronchopulmonary sequestration (BPS) with non-immune hydrops. This means there is abnormal tissue in the chest cavity that can lead to a heart failure (because the mass uses blood from the heart). They don’t know the cause for this and it’s very rare, but ultimately, it has a slightly better prognosis for the baby than the other diseases we were looking at because it can possibly be treated with a Fetal thoracoamniotic shunt (but realistically, there is a very high mortality rate for this illness because of the hydrops – it’s just that there’s a better “chance” to treat than the previous one). The shunt allows the fluid in the baby’s chest to exit into the uterus (out of the baby’s body) so the shunt helps drain that fluid and the lungs have room to grow, and the heart can hopefully take a better position. Then, LO would have surgery at 6-9 months old - and removing the mass after birth should not be a huge scare, but we want the baby’s lungs to develop as much as possible in utero because it’s the complications with preterm birth PLUS the disease that cause the risks.
So, the next step was to schedule the surgery. They would insert a needle into my uterus and place the shunt into the baby’s upper left side of chest to relieve the pressure. There are risks that the shunt won’t be inserted, risks of infant bleeding, or a possibility that the shunt wouldn’t drain the fluid. The largest risk would be early delivery, so there was a small chance we could have a preemie this week – a preemie that wouldn’t have lungs to support it. Babies delivered with hydrops at this gestational age are not typical preemies and outcomes would not be good for LO's independent living. The most likely scenario would be that the shunt is inserted appropriately, relieves the fluid pressure, and the lungs can catch up on some growth, but it is a high-risk situation. Baby may dislocate the shunt or it could become blocked, but even temporary relief of a week or two could have some gains worth the attempt. It could result in another surgery – after the surgery, it’s constantly being monitored in relation to the baby’s preemie status. If the baby doesn’t get the shunt, the tumor starts to influence cardiac performance because it takes away blood from the heart and rest of body at some point – which would result in heart failure. So treatment is the clear choice.
Fast forward to Thursday afternoon. We received word that the fetal surgery could proceed at 5pm. This would be the first surgery of its kind at Northwestern, but the surgeon had done them a few times. To put this in perspective, there are about 20 centers around the world that can manage this procedure, and they each have done up to about 30 procedures over 10-15 years. Because this disease is about 1 in 25,000 pregnancies (and then, we have a “special” type as well, so it’s even more rare), there isn’t a typical trajectory at this point. We checked in for surgery at 2pm and began monitoring, IVs, testing, etc. Each doctor came in our room to discuss decision-making with us, which was extremely hard. There was a real possibility that we could experience complications and have to make decisions no parent should ever have to consider.
At about 5pm, Chris and I parted ways and I headed into the OR. There were about 25 bystanders because the team was so academically interested in the scenario - everyone in L&D and MFM knows about this. I received an epidural (my nurses and anesthesiologists were angels) and lay on the table in the position of a cross, arms out and legs bent. It was one of the scariest moments of my life (especially because I'm trying to be strong but have slept maybe 7 hours over three nights) but I tried to remind myself that the most likely outcome would be positive. I have to say, watching the entire care team get ready for the procedure was incredible. They all had their roles and the energy was like an orchestra (although I certainly never need to see this again in my lifetime). After I was numbed up, I began listening to the doctors’ conversations as they tried to find a place to cut (it’s very hard with baby moving constantly, and the location of the shunt is extremely important for success). They were seeing some inconsistencies between Tuesday’s images and Thursday’s situation – almost no fluid around the baby’s bowels and maybe a slight decrease in fluid around the baby’s chest. They had an open discussion about what to do and ultimately decided (after putting a catheter in, of course) that it was not the right time to place the shunt because it appeared the baby may be making some progress on its own. This was the last likely scenario of the whole day (hence, it happening after the epi) – it would have been much more likely that I delivered than the surgery being postponed. However, without the fluid down by the bowels (called ascites), the diagnosis technically changes to a BPS without hydrops. This is a very good milestone, although of course, we can’t be sure what is happening since only two days passed between scans. So it isn’t time to celebrate, but it IS good news and definitely better than seeing the problem escalate. The entire team was blindsided (they’ve literally NEVER seen or heard this happen) and we are trying to be optimistic, although the baby does still have a tumor and fluid around his/her lungs. We are hopeful that the lack of fluid in the bowels means that our LO was able to start processing some fluid, and every little bit of fluid that is gone allows more room for those lungs to grow. It could be that the steroid shots helped the baby's lungs grow a bit. Monday is 29 weeks, and every day we get for baby’s brain, lungs, and heart to keep developing is good, so the delay of the surgery is a good herring. LO is a fighter already.
Our next steps are to go in on Monday and receive another US and review with the MFM team and surgeon. We'll hopefully see if there was any progress made, so please pray that LO has the strength to start processing some more of this fluid on his/her own. It would also be a win for mom, because I’m extremely uncomfortable and feeling as if our delivery date is tomorrow and not in early January (but will take discomfort any day of the week over the alternatives). There is a small possibility of delivery any day right now as well (among other complications), so please pray for my blood pressure and pulse to remain normal. Right now my pulse is 106 and I feel like my heart is falling out of my chest.
I’ll share another update once we have more info. Please pray for our family and LO if you can. And if you feel ANYTHING weird going on, get care for yourself. My intuition and my doctor's willingness to listen are the reasons LO has a fighting chance right now.
TW. Oh, and the irony? Our LO from our previous pregnancy would have been due this last week. I believe that our first LO has ordered some kind of miracle for his/her little sibling and that's why we saw some progress, but my PGAL brain is absolutely OOC right now.
Much love and hope everyone is doing okay...haven't been keeping up at all.
Re: Update - Possible TW
I am so sorry you're dealing with such an incredibly stressful situation, but what a blessing to be able to postpone (and hopefully cancel) the surgery. You, your family, and sweet little one will definitely be in my thoughts and prayers. Sending you all the stranger danger internet hugs! Please keep us updated as you can, we are all rooting for you!
DS2: Jan. 2016
DS3: Dec. 2017
Baby #4 on the way!
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DD1 EDD 9/29/2015, Born 9/24/2015
DS1 EDD 1/3/2018, Born 12/26/2017
BFP #3 3/21/2019, EDD 11/29/2019, MMC/D&C 5/7/2019
BFP #4 6/28/2019, EDD 3/12/2020
Together Let Us Seek the Heights
Born via emergency c-section - 8lb, 19.75 in, 100% stubborn BFP Chart
8 cycles of unmedicated trying = BFP!! - EDD 1/10/18
*Waiting for Baby Eags 2.0*;
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EDD: 1/6/2018
Eva Jane: 7/23/2014
DD2 8.22.13
MMC 1.4.17 at 16w
Expecting #3, EDD 1.29.18
BFP: May 6, 2017 EDD: Jan. 13, 2018