But it has been amazing.
I did not expect it to be easy, I hoped it would be simple, but I did not know how amazing it would be. I expected the birth to be awe-inspiring, and bringing our girl home to be wonderful, but I didn't know how amazing I would find the little things.
Things like hearing her heartbeat, seeing her kick her legs & suck her thumb on the ultrasound, watching my stomach grow (finally) and change almost from day to day. Things like feeling her kick for the first time, and being able to share that with her Daddy. These things ARE amazing, and I feel grateful every day that God chose us to parent this little girl.
But it has not been easy.
Let me back up. From the very beginning, and even before the pregnancy began, I have been afraid of, and almost expecting, complications. Maybe because I was seeing a fertility doctor & had already had trouble getting pregnant. But for whatever reason I was expecting issues, expecting hurdles we would have to cross, expecting problems. So I told myself that I wouldn't blog about this pregnancy until I was sure things were . . . okay. Normal. Until I had only good news to share.
First that meant waiting for a blood test to confirm pregnancy. We had to do several because the first one said "maybe." I didn't even know a blood test COULD be inconclusive! However after several tests we were finally sure that I was pregnant. (Who would've known it could be that difficult?!) :)
Then the doctor said my progesterone levels were low, so I needed to supplement in order to maintain the pregnancy and keep the embryo growing. We did that. Let me just say, they were not oral supplements. Fun times.
Because I was being seen by a fertility doctor, rather than a typical ob-gyn, I was able to get early ultrasounds to confirm the pregnancy. At 6 weeks we saw a heartbeat. That was amazing, a milestone I had been hoping and praying for. But because of the low progesterone issue I still didn't feel "safe."
At 9 weeks we saw our tiny gummy bear moving on the screen. My hormone issues were gone so I was able to stop with the supplements, but I still didn't feel safe because I was still within that first trimester window. I wouldn't feel sure until I passed 12 weeks & all was still well.
At 12 weeks I said goodbye to the fertility doctor's office and "graduated" to the regular OB's office. My first appt went really well, we heard the heartbeat on the doppler for the first time, and I left feeling great. The next week I went in for my End of 1st Trimester Screening, which is a combination of ultrasound and bloodwork. That ultrasound was the best yet, completely amazing as we got to watch our tiny sweet baby move around and bounce and kick on the screen. The tech & the doctor both said there were no structural issues or problems, and I really felt reassured. I had passed the dreaded 12 week mark and things were going well. I literally went to the baby section in Target the next day and bought an adorable (though gender neutral!) newborn outfit. I almost felt like it was too good to be true. We spread the news (or at least continued spreading it, most people already knew I was pregnant, just still very early) and I began to pick out which crib styles I liked the best.
4 or 5 days later I got a call that the bloodwork had come back. I wasn't worried because the Dr we met with had told me that when the structural scan looks good, the bloodwork usually does too, and he said someone would call with the all clear soon. Unfortunately the person on the phone did not get the message that they were supposed to give me the "all-clear." To make a long story a tiny bit shorter, there were a couple markers that showed up in the bloodwork that weren't problems in & of themselves, but did point to a higher risk of Down Syndrome. Since I was only 13 1/2 weeks along our only option if we wanted to know for sure was to wait 2 weeks and get an amniocentesis. The center that does them is very specialized and their risk level is one of the lowest in the country, but it was still not an easy decision to make.
After God arranged several things to fall into place for us we were able to get the test scheduled and our insurance to pay for the additional testing that would allow us to get the answer in 2 days rather than waiting the full 2 weeks. We got the call 2 days before Christmas that we were having a healthy baby girl. It was the best Christmas present we could ever have imagined!
First that meant waiting for a blood test to confirm pregnancy. We had to do several because the first one said "maybe." I didn't even know a blood test COULD be inconclusive! However after several tests we were finally sure that I was pregnant. (Who would've known it could be that difficult?!) :)
Then the doctor said my progesterone levels were low, so I needed to supplement in order to maintain the pregnancy and keep the embryo growing. We did that. Let me just say, they were not oral supplements. Fun times.
Because I was being seen by a fertility doctor, rather than a typical ob-gyn, I was able to get early ultrasounds to confirm the pregnancy. At 6 weeks we saw a heartbeat. That was amazing, a milestone I had been hoping and praying for. But because of the low progesterone issue I still didn't feel "safe."
At 9 weeks we saw our tiny gummy bear moving on the screen. My hormone issues were gone so I was able to stop with the supplements, but I still didn't feel safe because I was still within that first trimester window. I wouldn't feel sure until I passed 12 weeks & all was still well.
At 12 weeks I said goodbye to the fertility doctor's office and "graduated" to the regular OB's office. My first appt went really well, we heard the heartbeat on the doppler for the first time, and I left feeling great. The next week I went in for my End of 1st Trimester Screening, which is a combination of ultrasound and bloodwork. That ultrasound was the best yet, completely amazing as we got to watch our tiny sweet baby move around and bounce and kick on the screen. The tech & the doctor both said there were no structural issues or problems, and I really felt reassured. I had passed the dreaded 12 week mark and things were going well. I literally went to the baby section in Target the next day and bought an adorable (though gender neutral!) newborn outfit. I almost felt like it was too good to be true. We spread the news (or at least continued spreading it, most people already knew I was pregnant, just still very early) and I began to pick out which crib styles I liked the best.
4 or 5 days later I got a call that the bloodwork had come back. I wasn't worried because the Dr we met with had told me that when the structural scan looks good, the bloodwork usually does too, and he said someone would call with the all clear soon. Unfortunately the person on the phone did not get the message that they were supposed to give me the "all-clear." To make a long story a tiny bit shorter, there were a couple markers that showed up in the bloodwork that weren't problems in & of themselves, but did point to a higher risk of Down Syndrome. Since I was only 13 1/2 weeks along our only option if we wanted to know for sure was to wait 2 weeks and get an amniocentesis. The center that does them is very specialized and their risk level is one of the lowest in the country, but it was still not an easy decision to make.
After God arranged several things to fall into place for us we were able to get the test scheduled and our insurance to pay for the additional testing that would allow us to get the answer in 2 days rather than waiting the full 2 weeks. We got the call 2 days before Christmas that we were having a healthy baby girl. It was the best Christmas present we could ever have imagined!
The point in rehashing this is not to highlight what a rough road this pregnancy has been. What I am learning is that there is never a point when you know that your pregnancy (or anything else for that matter!) is going to work out perfectly. Not when you hit a certain trimester, not once the tests have been done, not even once the baby has been born! Problems can still, can always, come up. And that is the time when you most need support. Especially Christians! Sharing the hard times is so much more necessary than sharing the good times. Yes we need to show others what God has done in the good times and the ways he has blessed us. But if you don't share where you started from, no one can see how far God has brought you!
So, even though I have no guarantees now, and we are not sure of what the next few months, or even weeks or days, may hold, I am going to share our journey. No more holding back until I can answer every question perfectly or give a happy ending for every situation. I want to have an outlet to share my concerns, my fears & my questions as well as what I'm learning, the small victories (or the large) and any other things that come up along the way. I want you to see where we started so that weeks or months or even years down the road, when we look back at all God has done for us and our precious little girl, you can see how far he has brought us!
That brings us to where we are today.
I am currently 24 weeks & 6 days along. We had an ultrasound at 18 weeks where the dr thought there might be an issue with Annie's placenta or umbilical cord, so he ordered a follow up 6 weeks later. We went in for that follow up last week, at about 23 1/2 weeks. We spent about 4 hours in the Maternal Fetal Medicine clinic getting test after test and meeting with Perinatologists. They are the ones who take care of mom & baby up until baby is born. They are basically specially trained high-risk OB's. Neonatalogists are the baby doctors who take over at the moment of birth as well as helping make decisions regarding when to deliver & telling us what we can expect at different gestational ages (GA).
What they determined is that Annie is small for her GA, and even though she is still growing, she is not growing as much as they'd like to see. They also found that I have a condition called Vasa Previa which means there are blood vessels (either the umbilical cord itself or other fetal blood vessels) across the opening of the cervix. This is not a dangerous condition in & of itself during pregnancy, unless something were to happen that caused those vessels to be in danger. Something like my water breaking or my cervix beginning to dilate. To prevent that, it is "treated" by a C-section delivery before the chance of going into labor is likely, usually around 33-35 weeks.
The more critical & time-sensitive issue, however, is that they saw a problem with the umbilical blood flow between Annie & the placenta. It's complicated but basically Annie is having to pump harder (with more force) in order to get the blood from her heart back to the placenta (where it gets cleaned & filled with nutrients), than she should have to. This is causing her to not get as much blood back from the placenta, which in turn means not getting as much oxygen & nutrients as she should be. They believe that is why she is smaller than she should be, and not growing as quickly as other babies at the same GA.
A few days later we met with a different Perinatologist who was able to give us a bit more information, and make a game plan. He believes that the Vasa Previa (vessels over the cervix) is linked to the blood flow issue (the other doc thought they were two very rare & completely separate occurrences), and that both were caused by a problem with the formation of the umbilical cord when she was implanting in the uterus (at around day 7 of gestation!). If this is correct it is good news because it means that the cause of the blood flow problem is controlled (rather than wondering what is causing it and therefore if or how quickly it may worsen) and is less likely to worsen as quickly as it would if it was caused by an issue such as Preeclampsia or some other systemic problem.
His advice to us was, basically, to wait and check again. Over the previous 5 weeks, Annie had grown the equivalent of 4 weeks worth. While not ideal, her interval growth was not that bad. If she were to stop growing, for example, we would know that the blood flow issue had worsened and it would be time to talk about early delivery. He said he believes (no guarantees) that we are still in the early stages of the blood flow problem (which is called intermittent Absent Ended Diastolic Flow, or AEDF) and if he is right about the cause, it very well could be something that she has been dealing with from the very beginning. She has always been measuring small, it's just that the percentages are only now getting into the worrisome ranges.
That being likely, he felt we were "safe" in waiting 3 weeks and checking again. That is enough time that we should be able to tell if she is growing at the same rate as before, or more quickly or less quickly. By checking her blood flow we will also be able to see if the AEDF is getting worse, and if so, how quickly. At the last ultrasound it was intermittent, and best case it would still only be intermittent at the next one. The other reason for waiting 3 weeks is that since Annie is small for her age, that will be the first point that she would have a good chance at viability (& limited longterm complications) if we did see a problem and needed to deliver her that early.
In the meantime I am doing everything that could possibly help a) Annie get as much blood into her little body as possible and b)help her to grow & gain weight. That means bedrest (limiting my activity so that the blood stays where it's needed; with her!) and getting in as many calories/nutrients and fluids as I can, to give her the best chances of growing. My weight gain has been very slow this pregnancy (I'm actually still below my starting weight), and while it is not a cause for Annie's small size, the more calories I take in the more she has to work with, basically.
That brings us to where we are today.
I am currently 24 weeks & 6 days along. We had an ultrasound at 18 weeks where the dr thought there might be an issue with Annie's placenta or umbilical cord, so he ordered a follow up 6 weeks later. We went in for that follow up last week, at about 23 1/2 weeks. We spent about 4 hours in the Maternal Fetal Medicine clinic getting test after test and meeting with Perinatologists. They are the ones who take care of mom & baby up until baby is born. They are basically specially trained high-risk OB's. Neonatalogists are the baby doctors who take over at the moment of birth as well as helping make decisions regarding when to deliver & telling us what we can expect at different gestational ages (GA).
What they determined is that Annie is small for her GA, and even though she is still growing, she is not growing as much as they'd like to see. They also found that I have a condition called Vasa Previa which means there are blood vessels (either the umbilical cord itself or other fetal blood vessels) across the opening of the cervix. This is not a dangerous condition in & of itself during pregnancy, unless something were to happen that caused those vessels to be in danger. Something like my water breaking or my cervix beginning to dilate. To prevent that, it is "treated" by a C-section delivery before the chance of going into labor is likely, usually around 33-35 weeks.
The more critical & time-sensitive issue, however, is that they saw a problem with the umbilical blood flow between Annie & the placenta. It's complicated but basically Annie is having to pump harder (with more force) in order to get the blood from her heart back to the placenta (where it gets cleaned & filled with nutrients), than she should have to. This is causing her to not get as much blood back from the placenta, which in turn means not getting as much oxygen & nutrients as she should be. They believe that is why she is smaller than she should be, and not growing as quickly as other babies at the same GA.
A few days later we met with a different Perinatologist who was able to give us a bit more information, and make a game plan. He believes that the Vasa Previa (vessels over the cervix) is linked to the blood flow issue (the other doc thought they were two very rare & completely separate occurrences), and that both were caused by a problem with the formation of the umbilical cord when she was implanting in the uterus (at around day 7 of gestation!). If this is correct it is good news because it means that the cause of the blood flow problem is controlled (rather than wondering what is causing it and therefore if or how quickly it may worsen) and is less likely to worsen as quickly as it would if it was caused by an issue such as Preeclampsia or some other systemic problem.
His advice to us was, basically, to wait and check again. Over the previous 5 weeks, Annie had grown the equivalent of 4 weeks worth. While not ideal, her interval growth was not that bad. If she were to stop growing, for example, we would know that the blood flow issue had worsened and it would be time to talk about early delivery. He said he believes (no guarantees) that we are still in the early stages of the blood flow problem (which is called intermittent Absent Ended Diastolic Flow, or AEDF) and if he is right about the cause, it very well could be something that she has been dealing with from the very beginning. She has always been measuring small, it's just that the percentages are only now getting into the worrisome ranges.
That being likely, he felt we were "safe" in waiting 3 weeks and checking again. That is enough time that we should be able to tell if she is growing at the same rate as before, or more quickly or less quickly. By checking her blood flow we will also be able to see if the AEDF is getting worse, and if so, how quickly. At the last ultrasound it was intermittent, and best case it would still only be intermittent at the next one. The other reason for waiting 3 weeks is that since Annie is small for her age, that will be the first point that she would have a good chance at viability (& limited longterm complications) if we did see a problem and needed to deliver her that early.
In the meantime I am doing everything that could possibly help a) Annie get as much blood into her little body as possible and b)help her to grow & gain weight. That means bedrest (limiting my activity so that the blood stays where it's needed; with her!) and getting in as many calories/nutrients and fluids as I can, to give her the best chances of growing. My weight gain has been very slow this pregnancy (I'm actually still below my starting weight), and while it is not a cause for Annie's small size, the more calories I take in the more she has to work with, basically.
So that is where we are. It was quite a shock to hear that our healthy little girl might not make it another month inside, especially when we had no idea anything was wrong. However after talking with the 2nd Peri and discussing what could be causing this, we feel much better about things and are taking this all one step at a time. It is quite likely that I will be hospitalized after our 27 wk checkup, so that they can monitor Annie more closely and give us meds to help her prepare for an early delivery.
We are praying that she will be doing well enough that we can hold off on hospitalization a couple more weeks, but even if that is the case, it's very unlikely that I will get to 29 or 30 weeks & not be hospitalized. Once Annie's chances outside the womb are better, the doctors will likely take her out if there is any worsening of her situation. And while that is hard to hear, I feel like God is preparing all 3 of us for that outcome. Even if the AEDF were to clear up I would still be delivering by C-section prior to 35 weeks because of the Vasa Previa.
We of course would appreciate your prayers for our little Annabelle, that she continue to grow and that her AEDF does not progress. You can be praying for me for patience with the restrictions of bedrest & soon-to-be hospitalization, and for both Jeff & I for peace and wisdom in the decisions that we might soon be needing to make.
I promise that not all posts will be this long :) but I thank you so much for reading this, and for caring for our little family. I am looking forward to using this blog as a place to post updates on our status, things I'm learning about preemies and their needs, and even ways that family and friends can be of practical help with meals and such.
Oh and one last thing to leave you with: I knew that these 3 weeks of waiting would be difficult for us, particularly not knowing if Annie was doing better or worse. I believe God knew this too and he answered in such an amazing way. Because Annie is small and my placenta is on the front of the uterus I had not yet felt her moving. The weekend after we met with the doctor & got this news, I began to feel her move and kick. And not just tiny movements, these have been big enough that Jeff & my mom can feel them, and even see my belly move from across the room! I feel like God gave me an extra special gift of reassurance by being able to feel her inside me. As long as she keeps growing & getting stronger I will continue to feel her movements, and that is helping me feel (and sleep!) a whole lot better! God is good!
Wow, you will definitely be in my prayers.
ReplyDeleteWRT the placenta previa, I'm surprised they're still going to do a c-section so early. Did they say they think your cervix is weakened or anything? People I know who have had that with their placenta were induced at around 38 weeks.
Hopefully you get a good report at the three week mark!
Hey there! Thanks so much for praying. And about the need for an early C-section, it's actually not PLACENTA previa, it's VASA previa. Means that rather than the placenta covering the cervix, blood vessels (either the umbilical cord or extra fetal vessels)are covering the opening of the cervix.
ReplyDeleteVasa previa can be much more dangerous to baby than placenta previa if anything happens to cause those vessels to burst (dilating, water breaking, etc).
Hence them wanting to get her out before risk of any sort of preterm labor could begin. (My cervix is actually looking pretty good so far.) Hope that makes sense! I'm learning a lot more than I ever wanted to about these things, that's for sure.
Hey, Long time no see. This was a great way to get up to speed. You're still in our prayers and we miss you!
ReplyDeleteWe are dealing with our own troubles with the boys. The possibility of Aspergers has been mentioned by one of the Dr.s we saw and some special Ed school staff. James has been having a lot of trouble in school. Tim is still having some trouble, but not as bad as James. We are having our second meeting tomorrow at the school with 10 faculty. Psch, special Ed, teachers ect. It's been getting increasingly stressful. I just hope we can figure thing out and help him.
I will enjoy keeping tabs with you and the baby, and hope Jeff is well also. I know this is a trying time in all areas of your life and I wish I could live next door to walk with you through it. I guess knowing my heart will have to do for now...but you know where to look when you need a hand!