Doctors appointments

We seem to have a lot of doctors appointments.  This isn't unusual for my pregnancies.  I have type 1 diabetes, so I know that a pregnancy will involve lots and lots of time driving to the doctor or hospital for appointments, ultrasounds and non-stress tests.  In the past, I have left these appointments feeling grateful for the extra care, but nothing had ever gone wrong, so it was just another things to do. There was always a little anxiety, but it was basically another task on my list of daily things. The amount of appointments isn't really that much more, but the reasons are all different now.  A receptionist asked me at one of my recent a appointment if I was "high risk?"  I didn't know how to answer...high risk for what?  High risk for complications to the baby?  High risk for fetal death?
Every time I have a doctors appointment I cringe.  It's not like they are going to tell me anything worse, but its hard to have the relive the reality of this over and over  again!
Here is a synopsis of our recent appointments:

July 31: ultrasound #2

I already mentioned this appointment, but didn't tell you how I felt about it.  I was dreading this experience.  I didn't think I could walk back in to the room where we did the first ultrasound.  Luckily, they used a different room, but it looked exactly the same, so it didn't really help.  I didn't want them to point out each and every thing that was wrong with Eli.  They spent sooo much time doing that at the first ultrasound.  The ultrasound tech was nice enough, but didn't talk very much.  We were wondering if she knew what the diagnosis of our baby was.  I just want to make sure that everyone treating me knows, so they can be a little extra gentle.  I couldn't talk because I was sure I would just burst into tears.  I wasn't really sad; just overwhelmed with lots of emotion.  Jason was wonderful the whole time.  He said he was just excited to see Eli.  He wanted to find out if they could make a movie of him next time and use a better ultrasound machine because the images were so grainy.  They told us they would use their 3D ultrasound machine next time. The doctor came in a few minutes later and I started to feel much better as we started to talk.  She went through everything with us...his growth was at the 14th percentile, which she didn't seem concerned about.  My placenta was working great and I didn't have any extra fluid (all good signs).  I wasn't sure what to "want."  For a few seconds I had thought that a miracle might happen and they wouldn't be able to find anything wrong with Eli.  I knew that if this was going to happen, it would have, most likely, already happened.  I only entertained that idea for about 30 seconds.  All of the outcomes seemed so scary.  If he is not growing, he might have to be delivered early.  At the time, I wasn't sure if that would be the worst thing.  It would be over.  I don't feel that way anymore, but it was hard to know what I wanted at the time.  When I saw his little body, I felt a deep connection to him.  I knew he was mine.  It was very personal and very needed for my heart. They asked us how important a "live birth" was?  Basically, what were we willing to do to have him born alive?  She said that we needed to decide if a c-section was an option, but she didn't really encourage it because I have never had one and it wouldn't change his outcome. We knew we needed to decide this in advance. At the end she commented on how active he was.  She said that he wanted to be here..."Look how much he's moving! He's telling you he wants to be here!"  I wasn't expecting her to be so kind and encouraging.  Me and Jason felt like he was just happy to have his body.  There have been many times since that ultrasound that I feel him moving like crazy.  I feel him whispering to me "I'm still here mom."
 I left feeling exhausted and grateful that we had a decision to make, as weird as that may sound.

August 4: OB appointment with Dr. T

Dr T is just the best!  He has delivered all of my babies and has saved me from a least 2 unnecessary c-sections.  He has wonderful bedside manner and it so smart and so calm when it comes to "emergency" situations.  I feel like I have some authority to say this after seeing so many babies delivered while I worked in the NICU.  We would only go on the "emergent" deliveries and I saw many doctors functioning (or not) in these stressful situations.  I absolutely trust him with my delivery.  I was geared up for this appointment. For some reason, I thought is would last a really long time.  I wanted him to walk me through what would happen in the delivery and what kinds of decisions we should make.  It wasn't that long.  He said that he had only seen 10-12 of trisomy 18 AND trisomy 13 babies in his 15+ years of working.  For some reason that made me feel better.  When I go to Maternal-fetal medicine (ultrasounds), they make it sound much more common.  Feeling like this NEVER happens made me feel better...I'm not sure why.  He said that he had never seen a baby go home from the hospital with their parents in this situation.  I was a little surprised that he hadn't seen even 1..but I was glad he was telling us his actual experience instead of a statistic. We asked him about c-sections and he said that he had a hard time cutting into a healthy uterus when he knew the baby would probably die, but he would do whatever we wanted.  Before this appointment, me and Jason had talked about a possible c-section.  For a mother, I couldn't care less about a c-section.  Pregnancy and childbirth have so many sacrifices and a c-section doesn't seem like that big of a deal.  I didn't want ME to be the reason... because I would do anything.  It's hard to take that maternal feeling and balance it with the situation.  Jason had other concerns...mostly the same as the doctors and for my how I would be immediately after the birth.  We asked Dr T what the chances are of the labor, itself, being the cause of death for Eli.  He said that he felt it was very low...10% or less.  I told him that statistics aren't as comforting to me anymore since the chance of having a trisomy 18 baby is 0.05%!  I was kidding...kind of.  We know that God has a plan for Eli and we feel like if he were to die during the labor process we could accept that as God's plan for him.  Dr. T said that if a c-section isn't in the plan, then they wouldn't monitor his heartrate continuously during the labor.  This stressed me out at first, but I totally understand the reasoning for this. If they aren't going to do anything different, there's no reason to stress everyone out.  We asked about interventions after birth.  He said he felt it was best to do nothing besides the usual stimulation, drying, suctioning, etc. and possible blow by oxygen. He said that he felt this was best and the least painful for Eli, but he also understood that it is easier to say that as a healthcare professional than a parent.  We had to be able to live with the decision we made in the long run.  It made me feel better to have him say that this would be the best option for Eli. because that is how I feel. I told him that it was extremely important to me that Eli and Jason were with me the entire time.  I don't want him rushed off to the NICU.  He said that he didn't see a need for it and that shouldn't be a problem.  The whole appointment was just a reassurance of how me and Jason felt, but it was weird to hear it all so concisely said in about 10  minutes.  I left feeling sad, but reassured and less confused about the actual delivery process.
Also, he checked Eli's heartbeat while we were there and couldn't believe how active he was!  He couldn't find it for a second because Eli wouldn't stop moving.  I told him that this was normal for him : )

August 12: Neonatology

I was expecting this to be a nitty, gritty, statistics and physiology filled appointment with little emotion from the doctor.  I was completely wrong. We met with Dr. M, the geneticist.  I actually worked with her, and she wasn't my favorite.  Not the nicest creature in the world...anyways... I was nervous because I know she can be kind of crass.  I didn't think she would remember me and she didn't.  I didn't' say anything, because if people know I'm a nurse, they treat me like one.  I need to be treated like a parent right now.  She was so kind and compassionate.  I wasn't expecting it, and quite honestly, didn't need it from her.  This couldn't be the same woman I had worked with!!  I just wanted info and she didn't seem to have a lot.  She was supposed to me THE ONE who solidified all my current thoughts with her overflowing info.  Instead she acted like a social worker?  We asked her lots of questions that we had answers to, hoping she would expound more on these answers. NOTHING.  Here's what I learned (besides that she treats nurses different than parents).  Choosing to intervene or do drastic resuscitation measures doesn't seem to affect outcomes.  If a baby is going to live, they will live. If they are going to die, they will die.  So, if you are not appointed unto death, you won't die and vice versa.  I know this is true, but it is comforting to hear it from a NICU doctor.  With the technology we have, it seems like they try to  save everyone's life,whether or not they should.  It takes a lot of weight off our shoulders as we make the best decisions we can.  She made it sound like they can tell within the first 10 minutes-1 hr if the baby is going to live for a little while or not. One of the neonatologists will be there upon delivery and will do an assessment.  She said that going to the NICU is definitely a possibility to get a feeding tube or IV, where Dr. T said that wouldn't be necessary.  I like his answer better. I had never pictured Eli in the NICU up to that point.  I did after the appointment and I didn't like it.  If he is only going to be with us for a few hours or days, I don't want him in there.  I am more concerned with the quality of the time we spend with him and his comfort, rather than the overall quantity of time. Of course, I'm not opposed to the NICU!  I understand it's purpose and it usually saves lives.  If him receiving care in the NICU is going to make him feel more comfortable than being in my arms, I would definitely want this...but I have my doubts that it would.  But if his life can't be saved, why put him through the trauma! She told us all kinds of stories of survivors, which was not at all what Dr. T said.  It made us think about the possibility of him coming home a little more seriously. I left feeling annoyed and more confused.  

I bet you are tired after reading this.  I am too.