Warning: This is a long post!

Picture this, your running around Target’s maternity section to quickly find new clothes because a baby at work spit up a whole breast milk bottle all over you and, of course, you have no spare clothes in your car. While doing this you are on the phone with the Fetal Care Coordinator of your perinatologists office to go over your weeks appointments. The Fetal Care Coordinator at first is very nice and listens to you about your nephrologist appointment and your water check up. She then starts talking to you about appointments moving forward. She asks us about when the perinatologist wants to see us again (which, shouldn’t she know since she works for him?!) to which I say ’32 weeks but that I’m happy to move back earlier if they anticipate birth earlier than that’ all the while knowing that through the grape vine I had heard he actually wants to see me the week of the 25th (none of which was communicated directly to Ben nor I). She said she would talk to the doctor and check but that it would be smart to move back earlier. She then proceeds to say that they also want to set up an appointment with an infant cardiologist to monitor heart development which isn’t shocking. She then also mentions that they want us to meet with the NICU staff to talk about things like ‘the difference in cries between a healthy baby and a baby struggling to breath’ as well as to go over ‘end of life plans’. I stop in my tracks in Target. Of course I know these are things we may need to discuss in the future but the casual way she brought it up, as if she’s asking me how the weather is or how my day is going, threw me off. She then asks me if our perinatologist had talked about termination of the pregnancy. Again, another moment of ‘WTF’. First, if you work for our perinatologist shouldn’t you know this answer? Also, you clearly know I’m 23.5weeks because you said it earlier and that 23weeks even is the latest in the state of MN to terminate so shouldn’t that give you an answer? I told her we opted to not terminate as baby looks healthy and that since no one has any type of answers as to what’s going on we are continuing through the pregnancy (all while trying to be civil because at this point I am not happy). She said fine and then brought up coming up with end of life plans with the NICU staff and how far we are willing to go. She then said she would call my OB on Monday when she gets back from vacation and talk about transferring me back to the perinatologist and look into setting up cardiologist and NICU consults and she’d call back Monday. I hung up thinking ‘Wow, this woman really expects Natalie to not make it’. Also, as someone who spent over 15yrs as a Standardized Patient training medical students on inter personal skills, this woman is in desperate need of these trainings. Again, do I know these are conversations that need to happen, Yes. Do they need to be discussed over the phone so casually. Absolutely not. She should have simply said ‘We want to set up a meeting with the NICU staff to talk about what could happen in the NICU and go over all the possibilities’. That’s it. This whole conversation was just off putting but I brushed it off a bit until later when I got another phone call.

About 3-4 hrs later, Dr. Engebretson called back after talking to the perinatologist. She said that they discussed amnioinfusion and that they both agreed that since there is no proven benefit and that the risks are just too high. She also said they discussed steroid injections for the lungs and that since I am not showing any signs of labor they aren’t needed right now. She then said that they also discussed plans moving forward and that he never intended for us to not see him until 32weeks and that he wants us to get ultrasounds with him every 4 weeks. I told her that was never discussed with us but we can set those up. At this point I’m getting really frustrated. How could the doctor not tell us he wanted to see us every 4 weeks and if that was the case wouldn’t the morbid woman I spoke to from his office earlier today know that? Then in just wrapping up the conversation with Dr. Engebretson, she mentions that the perinatologist said that Natalie’s ‘prognosis isn’t good’. I stopped her. I asked her if he specifically said that to which she said yes and asked if he had said that to us. Holding back tears I said no and asked her to explain. She basically said that because of the amniotic fluid the lungs are an issue (which we know) and went into that the kidney issue is very dicey. From her tone, I think she was clearly unhappy that no one had directly voiced that to us. I told her that we knew all these risks but he kept saying to us that he simply had no answers and that baby could be fine or it could be the exact opposite. She then said if we aren’t comfortable staying with the perinatologist she and my OB are happy to keep us and do whatever they can. She was so kind and supportive as I am talking through tears. I thanked her and said we had a lot to think of. As I hung up my heart was in my stomach and I am angry. This explains why the woman this morning wanted to talk about termination, end of life plans, what babies sound like struggling to breathe, etc. How could our perinatologist essentially tell everyone ‘the prognosis is grim’ and yet tell us he couldn’t give us a prognosis because there are no definitive answers. This whole situation is hard enough without feeling like our perinatologist is hiding things from us. Do I know that our baby could die? Of course. This is why I haven’t brought myself to buy a single item or start getting the nursery ready. I know this is a very real possibility and it terrifies me. However, having EVERY doctor tell us all the possible outcomes but that they just don’t know because we have no answers gave me hope. Natalie looks healthy as can be and is growing appropriately. Maybe, despite the lack of fluid, she may be ok. Now, knowing our perinatologist is telling everyone the prognosis isn’t good has dashed my hope. I’m also upset that in his mind it’s for sure kidneys. When last we spoke he said he was his educated guess. That while looking at the kidneys and seeing that they work, it may be a filtration issue that we can’t see instead of a function issue. The nephrologist, ya know, the kidney specialist, said they look good and that since there was water in the stomach that’s a good sign. Now I just wonder if he saw something that he didn’t tell us that made him decide it’s 100% a kidney issue or if he is just guessing still. Again, I know it’s a possibility but I also know we have no proof of this, at least to my knowledge.

Ben and I talked for hours last night. Talked about where to go from here. Ben did bring up that this is one big game of telephone and that perhaps some messages are getting altered a bit down the line. Perhaps that is the case. I don’t know. We are going to talk to our OB and also our pediatrician to see if they have any recommendations or thoughts. We are also possibly going to try and get an appointment with Maternal Fetal Medicine which isn’t a perinatologist but is a practice at the University of MN that specializes in high risk pregnancies. At the end of the day, I just want a doctor who will be open and honest with me. Right now I feel as though our perinatologist isn’t being up front with us and is hiding information. This is an awful situation and I know that it’s very possible Natalie may not make it. I also know that there aren’t answers right now. We have no idea why I have no amniotic fluid so everything right now is educated guessing. I am, however, not ok with feeling like our doctor is hiding things from me. I also want to feel like I have a doctor who is willing to fight for Natalie and isn’t just expecting the worst. Overall, we are processing a lot. Ben is still the ever optimist and holding onto hope. Honestly, my hope is fragile right now. Hopefully it’ll return but right now I’m just struggling and heartbroken. We will continue to fight and do what’s best for our daughter, whether that be switching practices or switching doctors within this practice. Perhaps this is all a messy, awful game of telephone. Who knows. All we know is that we have a lot to think about this weekend as we move forward.

Wednesday we went back to my OB for a routine water check. As we both expected, not much has changed. They found one tiny pocket of water. It only measure .86cm (healthy fluid levels are 10 and higher). Thinking about it as I write this, I’m not sure if this is an improvement from our last ultrasound from the perinatologist where there was ‘no measurable fluid’ or if it’s simply too little fluid for the specialist to count. After our ultrasound we met with one of the doctors in my OBs practice since my OB is on vacation until next week. Dr. Engebretson was lovely and helpful. We did talk to her about amnioinfusion. She said that to her understanding it’s not proven to have any benefit but that she would call the perinatologist and see. Other than that, there was no big news to report. There is still no fluid but Natalie still looks great and has a rocking heartbeat in the high 150s low 160s.

On Tuesday we had our consultation with a nephrologist (infant kidney specialist). To say we were looking forward to this appointment would be a lie. We knew what this consult would be…a meeting going over all the scary things that COULD happen IF Natalie does indeed have a kidney issue.

Our nephrologist, Dr. Rheault is lovely. Warm, kind, thorough. She did say that looking at our ultrasounds she can see no clear issues with the kidneys (which we knew but is always nice to hear). She has never seen a case like ours–no amniotic fluid without any explanation.

The rest of the appointment was exactly like we thought. Since we have no idea what is going on we had to go through all the possibilities. Best case scenario is that there is no kidney issue and Natalie comes out fine. There is also a possibility that maybe there is a kidney issue that will get resolved as Natalie grows in utero and that she starts making fluid. Worst case scenario is also what we thought…no fluid could mean no lung development which equals death. We also talked all about dialysis and transplants. Here are a few things we learned in that regard:

Our Dr. and her group are the only ones in the state of Minnesota that do infant dialysis. They do 2-3 a year. Since they are the only ones to do it…they are pros and we are in the best hands should Natalie have a kidney issue.

In order to do dialysis, infants need to weigh 5lbs. That means that if Natalie does have kidney failure and comes out too early, there is nothing they can do.

In the case of transplant, infants must weigh 20lbs to qualify for transplants. This means that IF Natalie needs a transplant right away, she will need dialysis for at least a year. Usually, infants in this case spend about 3 months in the hospital and then move home and do dialysis and home. In this case, Natalie would need round the clock care and either Ben or I would have to quit our job to stay home and care for her.

Again, this is all speculation as we don’t even know if Natalie has a kidney issue.

Dr. Rheault did ask us if our doctor had started Amnioinfusion. Apparently the doctors can infuse saline into the uterus in place of amniotic fluid. Needless to say, this is something we are asking about and looking into.

Those are the big highlights from the nephrologist. We basically have no new concrete info on things but have a lot of info on the possibilities. It’s scary but we are doing what we can to stay positive and keep hope alive.

We would just like to take a minute and say thank you, from the bottom of our hearts, to all of our friends and family who have reached out to us. We are overwhelmed by the calls, texts, and messages from you all. Natalie and I are on so many prayer lists it’s incredible. We are humbled that we have prayers and well wishes coming from around the world, literally, in numerous different religions and beliefs. We are so grateful that our little Natalie is already experiencing how beautifully diverse this world is in the love, prayers, and support we have received. We are also so grateful to our friends who have dropped everything to watch Patrick during these last minute doctors appointments and for all those who have offered to be on our ‘Go To’ list should I need to deliver at the spur of the moment.

We will have at least two more blog posts coming to you this week. One will talk about our meeting with the Nephrologist (baby kidney doctor) and one about our water recheck ultrasound and follow up with an OB.

On a fun note…Ben had the chance to really feel Natalie move tonight which made us both so happy. I wasn’t sure if, with no fluid, he would ever have the chance to feel her but tonight, she certainly showed her strength!

Again, we can’t thank you all enough for your love and support. We love you all!

On December 19th, two very excited parents went in for a 20 week ultrasound. As many of you know, the 20 week ultrasound is where you have an in depth look of baby. This is the appointment where they look at all the organs and make sure they are functioning, and, for impatient people like us, this is the big appointment where you find out the gender. We couldn’t wait to find out what we were having and to start calling baby by name instead of just “baby”.

I remember looking at the ultrasound thinking “Man, this isn’t as clear as Patrick’s 20 week ultrasound” but dismissed the thought as all the organs looked to be working perfectly. When the “big moment” came, no matter how much the ultrasound tech tried, she couldn’t figure out the gender because baby was curled up with it’s legs crossed. We have heard of this happening so while we were disappointed, we didn’t think much of it.

Then came the time to meet with the OB and that’s when everything changed. Our OB informed us that I have low amniotic fluid. Usually amniotic fluid levels should be at a 10 or higher…mine were at a 2. My heart dropped. Our OB explained that this is why things were harder to see on ultrasound and why baby was curled in such a tight little ball. We were told the causes for low amniotic fluid and what this could mean for our little one (which we will explain in a bit) and referred to a perinatologist (a doctor that specializes in complicated and high risk pregnancies). I was also sent up to Labor and Delivery to get IV Fluids right away in hopes of that fixing everything.

Since December 19th, we have seen a perinatologist twice and Rachel has been getting IV fluids twice a week. Unfortunately, Rachel’s amniotic fluid levels are now a 0. Baby is a trooper. At every appointment, Baby has a nice strong heartbeat that runs anywhere between 153-162 and is still active. It looks as though all the organs (that we can see) are functioning well. So…what does all this mean?

First…lets talk about the 4 causes for low amniotic fluid.

1. Dehydration in the Mother: This was our first assumption. The week before the 20 week ultrasound I did have an awful stomach bug and the hope was that I just hadn’t recovered from that, hence, why I was rushed in for IV fluids. I can say that the nurses confirmed I was majorly dehydrated on the 19th when I got fluids. However, I am now receiving 1 liter of IV fluids twice a week and drinking 4 Nalgene bottles a day and still, I have no water.
2. My Water Broke: I have been tested twice to see if my water broke and both tests have come back negative. Also, on ultrasound it shows my cervix is closed and mucus plug in place. So again, this is not the issue.
3. Issues with the Placenta: We have had several ultrasounds and on every ultrasound it shows that the placenta looks healthy and is functioning well. So, there goes option 3.
4. Kidney Issues in Baby: With every ultrasound, our little one has had a full bladder and sometimes baby has fluid in the stomach. There is also good blood flow to the kidneys. So technically, everything appears to be working fine. The perinatologist’s BEST GUESS is that there is still a kidney issue that we simply cannot see on ultrasound and, right now, that is what we are going with for the cause of my low amniotic fluid but it is still nothing more than an educated guess.

So what is the harm of low to no amniotic fluid. Unfortunately, the answer is A LOT. Babies need amniotic fluid to survive. The biggest risks we are facing thus far is that 1 out of 3 babies do not survive birth when there is no amniotic fluid. This happens because without amniotic fluids, baby’s lungs have no chance to develop. Unfortunately, this is something we can’t even monitor. We have no shot of checking baby’s lung development without amniotic fluid. We just have to hope and pray that the lungs are developing enough to survive childbirth. Another big risk is that without fluid, baby does not have the ability to move and could possibly be stuck in the position they are in permanently. Again, we won’t know physical damage until after birth. Our doctors have had patients in similar situations deliver babies that come out healthy and with no permanent damage, and then of course, the latter.

So what now? Rachel is still receiving IV fluids twice a week for the forseeable future to perhaps help. We have a meeting next week with a nephrologist (pediatric kidney doctor) to talk about what life could look like if baby really does have an unseen kidney issue. We will discuss everything from minor care to the possibility of baby needing a full kidney transplant at birth. Rachel will also have a fluid check next week as well to see if levels have gone up and to check on baby. Until then, we wait and we pray.

We know this is a lot but we appreciate you taking the time to read everything. Again, if you can add us to your prayer list or good vibes list, we would appreciate it. One bright side is that after some genetic tests last week (all of which came back normal, yay!), we found out we are having a little girl. We have decided to name her Natalie, her middle name is still in the air. So when you send those prayers and vibes, send them to our dear, sweet Natalie. She needs all the support we can get.

With so many of our friends and family spread across the globe, we wanted to find a way to keep everyone updated on our journey with a high risk pregnancy and the well being of our little girl.  We will update when we have news.  In the meantime, any prayers, love, good vibes, healthy thoughts, etc you have to spare, please send them to our little Natalie.  She can use as many as she can get.