Our Week So Far...Wow, where do I begin...
This has been a crazy past few days.
I will start at our first doctors appointment Monday at 2:45 pm with Dr. Reinhart, the perinatologist. We were there to determine Embry's birth weight and base our c-section date on those results. Last week at our 36 week appointment we found out Embry was measuring very big and our doctor wanted us to have a ‘level two’ sonogram with the perinatologist to confirm her estimated size and base our c-section date on it.
It was confirmed that she was measuring really big but then the doctor gave us some news. We were told that Embry has fluid on her brain. It was a shock and we were very sad to hear the news, but we were also very confused. We wanted to know what this meant for her, not just in the womb, but for her future. Dr. Reinhart only works with babies in the womb, so I know he didn’t want to quote anything since he doesn’t have the answers to the questions we had. He told us he didn’t want to paint our situation bleak, but also didn’t want to paint it rosy. Both of us were quite scared.
We were both in a really big daze when we walked down one level in the hospital to my OBGYN’s office to meet with her to discuss the plan for the birth. My doctor, Dr. Remedios, made sure we understood our situation. We confirmed what we learned at 36 weeks (that the baby is large and that I have polyhydraminos , excess amniotic fluid) and that now we were able to see the baby’s fluid on the brain. We walked over to surgery scheduling and scheduled an October 1 c-section. We went back with my doctor again to answer any final questions.
On my list of questions to ask the doctor was “blood clot”. I have had an odd sensation, not pain, in my left leg for weeks. At my 34 week appointment I had written down to ask my doctor about it, but had forgotten. At my 36 week appointment I asked her to take a look at my leg. My exact words were, it’s probably in my head, but I have a fear of blood clots and have been having an odd sensation. She had me stand up bare legged and felt around. She said I have no signs on a blood clot and if it were one I’d have swelling in that leg and it’d be warm to the touch. I felt relieved for sure. As the week went on and the feeling didn’t go away, my intuition kept telling me something wasn’t right. I checked the mirror daily and made sure my leg wasn’t swollen. So Monday around 4:30 pm when I asked her for a second week in a row I told her I’m just paranoid but I’d like her to check me. Once again, no signs and she told me it was possibly a varicose vein buried in my leg, BUT that if we wanted she could order me a sonogram on my leg for peace of mind. I wanted it done.
Jacob and I were sent to a clinic about 3 miles from the hospital where I had an hour long sonogram done. At this point we were both spent. We had just received news about our baby possibly having an issue with her brain!!! We waited and waited and waited for results. Finally at 6:45 we asked the front desk if we could leave and just have them call with results. She said that was okay, but she was going to check with the tech. When she came back and said that it wasn’t a good idea if we left, I knew things were wrong. About 10 minutes later they handed me the phone where an OB from my doctor’s group was on to tell me the news. She told me I had a blood clot in my leg and to get to the hospital as soon as possible. Obviously we were terrified.
We arrived back at Presbyterian Monday night around 7:15 pm where I was admitted and told I would be staying until the baby arrived. We spent the first night in Labor and Delivery since the monitoring there is more intense and I needed to get started on a Heparin (blood thinning medicine) drip ASAP. My parents also arrived from Austin about midnight that night. It was a very restless night sleep if you can imagine. Vitals checks every hour, blood drawings very often, noises, doctors, nurses, etc.
Tuesday was spent trying to get the Heparin levels in my blood steady. I was moved up to the 4th floor of Presbyterian where all pregnant women who are being hospitalized stay. We met with a team of wonderful doctors throughout the day. OBGYNs from my group, Internal doctors, NICU doctors, the Perinatologist, etc…
Until this morning all doctors agreed that I was to be on strict bed rest…meaning no “bathroom privileges”. That has been no fun. I have to say, Jacob gets husband of the year and never once called in a nurse to do it. He insisted on doing it all himself….quite the trooper. This morning after my 6:00 am blood work came back, the doctors agreed that the Heparin levels were at a “therapeutic” stage and I was allowed to have bathroom privileges. I’ve never been so happy to pee before =) Also, I was allowed a shower this morning. I am not allowed off the Heparin drip for even five minutes, so it was interesting showering with one arm out of the shower, but again, Jacob gets the caretaker award.
I was assigned a very sweet internal doctor who will be on my case. She is on board to help deal with the blood clot and manage the clot after delivery. In short, she was shocked that the blood clot was discovered because I do not show any signs on having one. (this is quite the theme with everyone- I have even had nurses not assigned to me come in to have me tell the story of how the clot was discovered. Everyone is amazed that with showing no signs it was discovered). She is working with the OBGYNs to decide when I will be taken off the Heparin for the surgery and when I will be put back on it after surgery. (Probably 6-12 hours on either side).
We met with a NICU doctor Tuesday evening to answer any of our questions about what will happen when Embry is born. Essentially, she will come out and be taken to the NICU where she will have an MRI done of her brain to assess the fluid situation. The NICU team will work with Pediatric Neurosurgeons at Children’s hospital to deicde what needs to be done. She may, or may not, need a surgery to place a shunt in her head to help drain the fluid out of her brain. Again, he told us that we can’t plan much and won’t know much until she is born and the MRI is done. It was reiterated to us that we saw a Perinatologist at 22 weeks and everything was 100% normal with her brain and fluids.
Today I met with a Hematologist that was brought on board from Texas Oncology. He was very interested in my case and amazed when he looked at my legs and saw no signs of a blood clot. He had me explain exactly how it was discovered. He also told me that in some blood work that was done since I’ve been admitted that I have “Activated Protein C Resistance – Factor Five Leiden”. It basically means I have a disorder where I have a genetic predisposition to have a blood clot. He also said that pregnancy is the larger factor in this situation. He let me know that for any other pregnancies I have, I will basically be considered “high risk” in the sense that I will be more likely to have a blood clot again. Also, I am never again allowed to take a birth control pill. I will most likely spend a lot of time on anti-coagulating medicines. Good news is, all is manageable and with this knowledge we will just always be aware and proactive about this. He is also advising my OBGYNs on when I’ll be taken off the Heparin and when I’ll be put back on it. When I leave the hospital I will be on a shot form of the drug for 3-6 months.
Pediatric NeruosurgeonToday, Wedneday, Jacob and Mark went to go meet with the Pediatric Neurosurgeon at Children’s hospital who will be working with the NICU team here after Embry is born. Here is a little write up of what Jacob learned…
What do we know about Embry based on Monday’s sonograms?
She has extra fluid in her brain, causing her ventricles to swell. The swelling is at about 30 millimeters. Anything above 10 is abnormal. Her whole body is big, so we don’t know if her head is disproportionately big.
We don’t know if she’s going to need surgery. If she does, there are two options. The first, and way more common option, is using a shunt. A shunt is a valve that takes the fluid out of the brain and releases it somewhere else in the body. It would probably stay in her for the rest of her life. The second is EVT, where they cut an opening in the brain for the fluid to release.
What’s the probability Embry will live a normal life with a shunt?
We aren’t sure Embry is going to need a shunt. If she doesn’t, the odds of living a normal life are great. If she does need a shunt, she’ll fall into one of three groups. Of ALL the people requiring shunts, the groups are about evenly divided:
(1) Totally normal life (mentally and physically)
(2) Functions well but has developmental issues and needs help in school
How do we know which group Embry will be in?
Which group an individual falls into depends on several factors, including:
(1) The amount of swelling (Embry’s is high at 30mm, but it’s not “severe”)
(2) How long there’s been swelling (there was not swelling when Embry had her 22-week sonogram, which is a REALLY good thing)
(3) How much damage has been caused to the brain when the shunt is placed (her 37-week sonogram indicates that, if there is any damage, it’s not significant)
Overall, these factors would give Embry a greater chance of being in the first or second group than in the third.
When will we have a better idea of what’s going to happen?
Immediately after birth, doctors will do an eye test. If she looks good, that may be the end of the story. More likely though, she’ll have an MRI soon after birth (1-4 days after birth). The MRI will answer many questions.
I'm back now =)
This was probably the best day of all because of this appointment. We have been quite worried about what all of this means for Embry in the long run. We both feel great about what Jacob learned and we are very optimistic that Embry is going to lead a normal, healthy life! When I talked to Jacob after leaving the appointment I could hear it in his voice that he felt great. His exact words is he feels "tons better" after meeting with this doctor. Both he and Mark said how wonderful Dr. Sacco is and they both feel 100% confident in him.
Overall, I know this is a TON of information and it was hard to actually sit down and try to organize it in a way that makes sense. So much has happened in the past 48 hours and I know I’m leaving out a ton, but the bottom line is that I am in the best place possible for my blood clot and am thanking God that it was caught when it was, especially given the fact that I am not ‘showing’ any signs. And as for Embry, we know that she has fluid in her brain, but we also know that all other organs are 100% healthy and she is doing great in the womb. We can’t know anything else until Monday when she arrives and until then we are trying to stay positive! We know we're in great hands here at Presbyterian and have loved everyone who is taking care of us here! (These nurses all are awesome!!) Also, my OBGYN group has been amazing. They have created this amazing team of doctors for us and are truly being great advocates to get me and Embry the best care and most thorough care they see possible.
Thank you all for your thoughts, prayers, calls, texts, etc. As you can imagine things are quite busy around here and I was able to make my first phone call today around 4:00 pm. It’s much easier for me to be able to get news out this way.
Love, Cori and Jacob