2 Weeks

I wish I could be writing these updates like I did with Noah, capturing all of the fun and exciting things my baby is doing. Instead, I have to document all of the concerning issues going on with my baby girl. Today's concern is with her liver. When she was first born, things looked ok. Then she started looking jaundiced so she got the bili light. I wasn't worried because Noah had jaundice too, and it's common when a mom has Rh- and a baby has Rh+ blood. About a week ago one of our doctors told us that her direct bilirubin level was climbing again, along with a liver enzyme called GGT. He guessed it was most likely because she hadn't gotten to eat a lot of breast milk following her surgery, and expected the levels to drop again. And they did. But today they drew her blood again and now the levels of both direct bilirubin and GGT are even higher. They did an ultrasound of her liver and saw nothing obviously wrong. This means that a pediatric gastroenterologist will be seeing her early next week, and they may need to biopsy her liver to get a better understanding of what is going on. The diagnosis for now is cholestasis. Excuse me as I go Google that and then cringe in fear. Can't this poor girl ever win? Oh, and don't even ask me about how she's eating. Words can't express how sick I am of talking about that.

NICU Day 11

Another cut and paste from our CaringBridge site.

Yup, still here, and no real end in sight. Brian and I went home last night. We could've continued to stay in a NICU boarding room, but being at the hospital 24/7 for 10 straight days makes you a little stir crazy. Plus we really needed some Noah therapy. Have I ever mentioned what an absolutely awesome kid he is? So grateful for all of the heartache that little boy has gotten us through!

Elodie continues to struggle with eating. That's about the only thing holding her back from being able to join us at home. It's really frustrating because there is nothing to do about it other than give her the time she needs to figure it out, and it's anybody's guess as to how long that will take. She had one good day on Sunday where she ate the majority of her bottles, and then her super eager beaver type-A nurse got it in her head that she was ready to lose both her IV and feeding tube. Well, she wasn't, so the tube got put back. The bottles they give her are 63-66mLs, and she eats 20-30 at best most days and the rest goes through her tube, although many feedings all go through the tube. An OT evaluated her today and thinks she might have some tongue coordination issues, but there isn't much to be done about that except to be patient and keep letting her practice. The good news we got today though was that she finally gained some weight. She had been losing for several days straight and weighed 5lbs9oz two nights ago, but last night she finally increased back to 5lbs13.5oz. It was a relief to finally see a jump because poor baby girl was starting to look sickly. They're supplementing my milk with a high calorie formula so hopefully that is helping also. In addition to her difficulty eating, she also seems to be struggling with reflux and often throws up much of her meals. It's so hard to be patient as we figure this all out, but that's what we have to be. She runs the show, and isn't that what having a daughter is all about?

Looking at the big picture, had we known 2 weeks ago that the biggest issue we were going to be facing was eating and gaining weight, we would have been thrilled. She's doing remarkably well in all other facets of her health, and for that we are so thankful. But it doesn't make this easy.

Elodie's Progress

I set up a CaringBridge site this week, so I'm just cutting and pasting my last two updates to make it easy on myself. Enjoy!

8/20/14:

Elodie had her first ultrasound shortly after birth. That night one of her doctors came to explain to us what they found. Her ventricles were indeed filled with quite a bit of cerebrospinal fluid. Another concern mentioned prior to her birth was that the corpus callosum and septum pellucidum were not present in her prosencephalon (the front portion of her brain). That led them to believe she could have a condition called holoprosencephaly, a very scary diagnosis. However, the new ultrasound showed that both of those structures were present, just thinned from the excess fluid. So, she does not have holoprosencephaly. Such a relief! They also found a clot in the sinuses of the occipital horns (I think that's what they said), which is in the back of the brain. This is not related to the hydrocephaly, but is another issue that must be addressed. In order to treat the hydrocephaly, Elodie needed to have a shunt placed into her brain which drains into her belly. You can read more about shunts here:  http://www.healthline.com/health/ventriculoperitoneal-shunt#Overview1
The next day she had an MRI and CT scan performed to get a better look at everything. Again we got good news. Elodie actually has a great amount of "cerebral mantle" or brain tissue present in all areas of her brain. As the fluid drains out, her brain matter should "fluff up" and re-expand, although there are no guarantees as to how much. There are also no guarantees about damage that may have been done to the existing brain tissue. They determined the cause of the hydrocephalus is a condition called Aqueductal Stenosis, and of all of the conditions that could be causing it, this is one of the best of the best. Prior to her birth, they gave us the following prognosis: less than less than 1% chance of typical development, 5% chance of mild disabilities, 95% chance of moderate to severe disabilities. Now with her new diagnosis the prognosis is as high as a 40% chance of typical development. WE WILL TAKE IT!
On Monday, August 18th Elodie had her shunt placed into her brain and belly. It went flawlessly, and we can already see the changes beginning in both her head size and shape. Modern medicine is so amazing! Prior to surgery her head circumference was somewhere around 40cm, and last night (2 days post shunt) it was measuring 38.3cm! I've attached some of her MRI photos, and a before and current head shot. 

Cross section view

View from top down. The black spot in the back is a blood clot.

Pre-surgery

Post-surgery, and "caving in"

8/22/14:

Elodie continues to do pretty well. Her head continues to decrease in size each day. She started somewhere around 40cm, which is not even on the charts (beyond the 100th percentile). As of yesterday evening she was down to 37.1cm, which is now on the charts around the 90th percentile. It's amazing and a little bizarre to watch your infant's head change size and shape so drastically from day to day. Her weight is remaining pretty stable since birth, which is due in part to the amount of fluids that were pumped into her prior to her surgery.

Today the word "home" was brought up several times. As far as Elodie's hydrocephalus is concerned, that is being well controlled by her VP shunt. Another issue we're working through is a blood clot that is present in the back of her brain. On Wednesday she began IV Heparin therapy to thin her blood and prevent her clot from growing. As of tonight, she has been switched over to a different drug, Lovenox, which is being administered through subcutaneous shots. The placed a port into her right leg to administer those shots, and when she goes home Brian and I will administer them ourselves. We're not really strangers to this stuff as I have taken Heparin many a time when we were going through infertility treatments. The crummy thing about Lovenox is that it stings and bruises, and even with the port eliminating all of the needle sticks, the nurse said it probably still won't be too comfortable for her. :( Once they determine that she is getting a therapeutic level of the drug, then that situation is also fairly well controlled. So her last hurdle to going home is her feeding. Currently they want her at 36mL every three hours. The goal for discharge is 45mL. Right now we're lucky to get her to take 20, although she has taken up to 33. Her ability to nurse has been demonstrated a couple of times, but usually once she's in my arms or lap it's a quick trip to lala land. Brian is having more success with the bottle, but she is slow and they put her on a clock. Whatever she doesn't eat by mouth in 30 minutes gets put into her NG tube. I feel like this is going to be her biggest hurdle to face before coming home. Babies with hydrocephalus frequently have difficulty with feeding, so if this is the tough thing she has to go through, I will take it. We hope that she starts to get the hang of eating, because if she does, she could be home by next week! Cross your fingers with us!

My sweet little peanut

Elodie's Birth Story

I guess it began Thursday evening. I noticed that I was getting pains that more closely resembled menstrual cramps than Braxton Hicks contractions. They felt painful low in my pelvis, and burned and ached quite a bit. Friday morning I woke up and they were gone. However, throughout the day they showed up off and on. When I went to bed Friday night they were kind of bothering me more regularly, but I didn't think too much of it. I tracked them on an online contraction timer, but they were pretty irregular. Brian noticed that I was timing and told me to let him know if anything serious was happening. Saturday morning I woke up very early, around 1:30am, to a more painful contraction, and then they continued. They were still primarily located low in my pelvis, and not really radiating upward or downward, so I wasn't too sure what to make of them. But they were getting more frequent. Around 3:00 I decided to head downstairs and pre-register for the hospital, just in case. I also began timing my contractions. They were coming pretty erratically, anywhere from every 4 minutes to every 12 minutes. But again, they were really starting to get uncomfortable. I considered calling our nurse advice line, but then things started spacing out further, from 18 minutes to 32 minutes. At that point, it was 5:00am and I decided to go back to bed. I woke up around a quarter to 9:00am to another painful contraction. I got up and joined Brian, Noah, and my mom who were all watching TV. (Ok, my mom was actually cleaning, and should get credit for that.) I made the conscious decision not to eat or drink anything because I was really starting to suspect that this might be it. By 10:00am the contractions were back on a more regular schedule. After a while I headed upstairs thinking it would be smart to shower, but once I got into the bathroom I was concerned that maybe it was actually a really bad idea. Instead I finally decided it was time to call a nurse. Since it was a Saturday, our clinic system was on after-hours mode and it took 15 minutes just to get through to a receptionist. I explained that I thought I could be in labor, so she flagged me as "high priority" and patched me through to OB nursing. "High priority" my ass! I sat on hold for another 15 minutes, and by this time contractions were consistently 3 minutes apart and required concentrated breathing to get through. I should have trusted my instincts and just hung up at this point, because the nurse didn't even question me. She asked if I could head to a different hospital as the one I was going to was getting very busy, but when I explained that I was scheduled for a c-section there for the 18th, she told me to go and they would be expecting me. Brian and I threw some things into a suitcase (we were planning to pack later that day), kissed Noah goodbye (he clung to me and cried and cried), and headed out. 

The road we live on connects to a major highway that leads to the mountains. Well, this was a Saturday morning which is a popular time for people to be heading west. We were about the 5th car in line waiting to turn left to head east, and a steady stream of cars were slowly heading west. It didn't help that about 100 yards down the road to the west, a police car was pulled over with lights on. It took what felt like forever to finally get onto the highway. Once we made it, we had about a 45 minute drive ahead of us. About 10 minutes into the drive, I started to become concerned. The contractions were consistently 2-3 minutes apart, and lasting a little over a minute each. And they HURT. I really had to focus on my breathing. Keep in mind this is a bit of a twisty, windy road, so there is a lot of shifting from side to side. Not comfortable when you are in active labor! After about 30 minutes we were getting close to downtown Denver. I was starting to feel panicky. Things were really feeling intense and I went from just breathing through contractions to moaning loudly. Brian was clearly getting more and more nervous about me. He was so irritated by any little thing people in front of us did. If they didn't immediately floor it after a light turned green, expletives flowed. As we neared the hospital, I finally admitted that I wasn't sure I would make it. I think that really freaked Brian out. We finally made it to the parking lot for L&D, and of course the one open spot was somewhat blocked by some idiot who illegally parked their giant SUV. Brian had to make several maneuvers to get my car in, and the whole time I felt like I was dying. He ran to my side of the car and opened the door, but I was in the middle of a contraction and had to wait. We walked as fast as I could, and Brian ran ahead to get a wheelchair. I waddled into the triage room just as someone was coming for me, so they brought me into the back and got me into a room. I could barely talk and my whole body was shaking uncontrollably. In my head I thought, "C'mon people. Just look at me. I clearly need to be admitted STAT!!!" A nurse helped me lie down and did a quick cervical check. I could tell by how far she was reaching that I was extremely dilated and baby was low. I got another contraction and felt like I needed to push. She told me that whatever I did, do NOT push. Then she ran out of the room and asked them to get me a room immediately. "She's 9cm and her bag of water is bulging." This comment didn't surprise me, but it still scared the shit out of me. The nurse came back and talked me through another intense contraction. My body wanted to push so bad, and the only thing that truly helped me not to was the fear of what could happen to baby if I did. She began wheeling me up as another nurse was calling up to L&D to explain the situation. I overheard her say, "History of hydrocephalus, history of c-section." I was having another contraction, so I began shaking my head and pointing at my stomach to say, "NO, THIS baby has hydrocephalus and I need a c-section NOW!" They did not pick up on this, so I was wheeled to a regular delivery room. I was so out of it, but I knew things were not right. Luckily a doctor came immediately and she was able to clear everything up and got me into a triage room. There they hooked me up onto the monitors, got my IV in, and began tracking everything. Initially they couldn't pick up Elodie's heartbeat, and I was so scared, but Brian directed them to the spot where our OB nurse had picked it up earlier that week and immediately we heard it. However, with each contraction she was having major decels which dipped into the 60s. They explained that we needed to get to OR immediately and rushed me out while they took Brian to change into scrubs. As they wheeled me into the OR, the anesthesiologist asked how much time he had to prep. The doctor replied, "2 minutes!" I had to scoot off the bed they wheeled me in on and onto the one I would deliver on. Oh my god that was so hard with the pain I was in. As soon as they got me onto the bed, they sat me up and bent me over. The anesthesiologist told me I would feel two quick stings, and then the spinal would go in. As he worked they tried to get my shirt off, but it was hung up on my IV so they had to leave it hanging off the IV line. It was like a total circus. They laid me down and stretched my arms out. I think someone made a joke that I was being crucified. I felt someone holding my left arm and finally turned hoping to see a kind face. It was Brian! I had no idea he had even come in. He must have been too in shock to say hi. The anesthesiologist began brushing something cold on my legs and abdomen and asked if I could feel. I could, so he waited another minute or two and then I wasn't able to feel it in all the right places, so he gave them the green light. And just like that, they began the incision. From the time they wheeled me into the OR to that point had to have been no more than 7 minutes. I felt quite a bit of pressure as they worked to get her out. I think she was feet first, so they really had to dig to get to her head which was way up by my ribs. It was fairly uncomfortable, but not painful. And then, she was out. She didn't cry right away, but Brian assured me that she was looking around and alert. Then she cried, and it was the sweetest sound I have ever heard! It was such a relief, because a good cry meant that we did not need to have the "resuscitate or not" talk. Thank GOD! Brian got a good look at her and came back to tell me that she was cute and her head didn't look any weirder than his. (Brian has a giant noggin.) They cleaned her up and she earned Apgar scores of 8 and 9. That's even better than Noah! Nobody had ever said boy or girl, so I asked Brian to please confirm that she was really a girl. Never having seen an ultrasound image with my own eyes, I was still in quite a bit of disbelief that she could be a girl! And yes, they did confirm it, and in that moment I thought, "Oh my God, I have my Elodie!" Sweet, sweet relief! 

In all of her "fresh out of the womb" glory!

After they got her cleaned up they handed her to Brian and began sewing me up. At some point they took her off to NICU and Brian decided to stay with me. I was wheeled to recovery and after two hours we finally got to go to NICU to see her. As they wheeled me over we saw my mom, step-dad Ed, and Noah waiting for us. We all went in together, and then I got to hold my girl!

They encouraged me to attempt to nurse her which I was so excited about! I really didn't expect that. She was definitely interested, but as I expected, I remembered nothing about how to breastfeed. We struggled together to get a latch, but with plenty of persistence we finally succeeded. She suckled and nursed on and off for about 20 minutes, stopped, and then tried again for 5-10 minutes more. By then it was about 6:00pm and they wanted to take me into my own room. I kissed Elodie goodbye and off I went.

When I found out I was going to have a c-section, the one silver lining was that I wouldn't have to drive down the mountain in labor for an hour. Well, so much for that! In some respects, I love that my baby and my body made the decision of her birthday, and not a doctor. But wow, it was one intense experience! From the time we arrived at the hospital to the time Elodie was born was maybe 40 minutes. Talk about cutting it close. And I have to say, although I wasn't allowed to have a vaginal birth, I am pretty impressed with and proud of myself for making it all the way to 10 with no pain relief. I never experienced natural labor with Noah because I was induced, so I'm kind of glad I got as much of the experience as I could with Elodie. But would I like to do it again? Um, no! 

It's getting late, so tomorrow I'll try to bring you all up to speed on our first 4 days living the NICU life. Although I should probably at least tell you that her surgery went flawlessly, so THANK YOU to everyone who prayed for her or kept her in their thoughts. It worked!

She Is Here!

This will be brief since I'm posting from my phone, but I wanted to let you all know that Elodie had plans of her own! I'll tell the crazy tale in detail at a later time, but we had a rather urgent c-section yesterday, August 16th, and Elodie Lee was born at 1:11pm. She weighed 6lbs1oz and was 48cm long (almost 19"). Her head circumference was 40cm, and although that is the 100th percentile, it really doesn't look as unusual as I expected. She is just a little peanut!! She has had very stable vitals, is breathing room air with no assistance, and has attempted nursing! I have been able to hold her several times, and am just about to go back for another fix and another attempt at nursing. Despite all of the absolutely great things that have happened so far, the reality is that she does have many hurdles ahead of her. Provided that her platelet counts and clotting factors improve after her platelet and plasma transfusions today, she will be having her shunt placed tomorrow afternoon. The thought of my 2-day old daughter having brain surgery is daunting, but we trust she will be in great hands and surrounded with love and prayers. So if you pray, please do. If you're more of a positive thoughts and vibes kind of person, please also send those her way. Thank you!

Pictures, birth story, and many updates to come!

This Is So Hard

Today is our 10 year wedding anniversary. Weeks ago, I had already started today's blog entry in my head. It was going to go something like, "Wow, what a journey, and how blessed are we to be closing one difficult chapter of our life together and starting the rest of our lives with our family finally completed." But today just doesn't feel that happy, and I don't feel those same sentiments. Our daughter's diagnosis last week left me a completely broken person. I am constantly asking the question, "why?" How could this happen to us? There we were, just weeks from our happy ending, ready to close the door on our incredibly painful infertility journey, and BAM! A new, far more painful wound is opened, and it is ripping my guts out.

There are so many layers to my grief it's not even funny. I definitely have moments of denial. They are pretty fleeting though. I tend towards pessimism, so it's not hard for me to accept that something awful is happening. Brian is the eternal optimist, so I'm mostly leaving this part up to him for now. I have read several stories of fairly happy outcomes, but even those seem completely overwhelming to me at times. I just can't fathom how we are going to manage the stress of everything. Our daughter is going to have brain surgery. Holy shit. We did a tour of the NICU yesterday and it made me realize that I am in some state of denial though. Maybe for me, the denial is that this is going to happen in four days. And then it is never going away. I am trying to cherish our "normal" life right now, because everything is about to change, forever. Unfortunately it's super hard to enjoy anything when you are 38 weeks pregnant and it feels like your pubic bone is about to snap in half and you have tight, painful braxton hicks contractions all the time.

There is also anger, but for me it feels more like bitterness. It's the bitter, awful, resentful feeling that I experienced with infertility. I was so looking forward to it being gone from my life. But oh, it is so much worse right now. I look at families with their perfect healthy children, or I read the stupid everyday worries of moms on my BabyCenter August Birth Club, and I think to myself, "I hate you. You have no idea how lucky you are. Why can't I be you?" While we were sitting in the ultrasound room last week wiping off the jelly from my stomach, I grabbed onto Brian and through hysterical tears sobbed, "Why does this have to be so hard for us? Why let us get pregnant if this is what happens?" I don't understand.

Depression I have in aplenty, and I worry about how I will do after the birth. I had major anxiety with Noah, and he was a typical healthy newborn. I have no idea how I'm going to cope mental health wise with balancing a medically fragile infant with a four year old and a career. I can't even think about it. It's too overwhelming to me. What depresses me most right now is the detachment I feel from this pregnancy and from our baby. I know I love her to the moon and back. This was confirmed for me at the OB appointment this week when it seemed to take too long to find her heartbeat on the doppler. All I could think was, "she can't be gone already." But I am so afraid that we are going to completely lose her that I think a part of me is already preparing for this. When I walk by the nursery and look at the few outfits and items we have prepared for her, I think to myself, "maybe." Maybe we will have a baby. Which is such an insane thought for someone who is currently 38 weeks pregnant. Of course we are having a baby. I guess the real troubling thought is, "but will we get to keep her?" It's such an awful feeling and I hate it.

Have I mentioned yet all of my other fears? Most immediately, I am nervous about my c-section. I have never had surgery. Having my wisdom teeth out and my egg retrieval are the closest I've come. It probably sounds stupid and silly compared to the gravity of everything else going on, but I am pissed that I am going to have an ugly scar on my body. Because of her head size and condition, it is entirely possible they will do a vertical cut, and not the more easily hidden bikini cut. And I am especially not looking forward to the additional difficulty it will place on me immediately after the birth. It is so unfair that I won't be able to be with our daughter right away as they evaluate her and send her for the MRI. I probably won't be there when Noah or my parents see her for the first time. It will also make pumping more difficult and uncomfortable, or so the nurses have warned me. There is also tremendous fear of the unknown. Right now the perinatologist doesn't feel like Elodie's condition will be immediately fatal, but her guess as to the odds are "less than 10%." That is still frighteningly high in my opinion. It sucks so much to get this news so late in our pregnancy. I feel like most people in our position have known that there was hydrocephaly present since their 20 week scan, which allowed plenty of time for fetal MRI, amniocentesis, and other diagnostic information to be gathered. We have almost no picture of what we are up against. Was it a hemorrhage? Is there a blockage? Does she have some form of holoprosencephaly? If so, how severe? How big is her head going to be? Will she have facial deformities? Are her other vital systems intact? The financial aspects also freak me out. I can't imagine all of the medical bills that we won't be able to afford. It also worries me that we live so freaking far from everything. I imagine we will have a lifetime of hospital visits and emergency situations ahead of us, and we live almost an hour from help. Will we have to move back into Denver? I know that all I can do is take it one day at a time, but these are the worries that swirl in my brain constantly.

I'm pretty sure that was a big, incoherent rambling mess. But I need to get it all out. And I hope one day I look back at this post and feel completely mortified at the horrible thoughts I had leading up to Elodie's birth. Doctors gave us a less than one in a million chance of ever conceiving on our own. Let us hope beyond hope that Elodie continues to amaze and surprise us by beating all kinds of odds.

Updates

I love blogs. When we were going through all of our infertility struggles, I found blogs to be very comforting and uplifting. You can read articles packed with statistics and medical findings until your eyes bug out of your head, but it's nothing compared to reading stories of people living and surviving your own struggles. This situation is no different. I am voraciously reading blogs of other mommies whose children have hydrocephaly. Because that is the only diagnosis we have for certain right now, that is all I am focusing on. There were some other scary diagnoses thrown around as possibilities at our appointment, but from what I've read, they are pretty inconsistent with having had a normal 20 week brain scan. In all of these blogs I have seen a wide range of outcomes, and although we know that our baby will have significant delays, we feel a lot more hope than we did on Monday.

Brian called back to the perinatology office yesterday and asked questions we hadn't thought of while we were still in complete shock. At this time, they are skeptical that there has been a hemorrhage. Typically when this is seen, there is a part of the brain that is pushed to one side. However, all pockets of fluid looked fairly even. So for now the doctors believe that it is more likely that there is a blockage somewhere that is not allowing the cerebral spinal fluid to drain properly. The ventricles of the brain should be somewhere between 5-8mm in diameter, with 10mm being the outer range of normal. Our baby's are currently measuring around 42mm. Way outside of normal. As a result, all of the brain tissue is being pushed to the sides of the skull. In the proencephalon (forebrain), our baby appears to be missing the septum pellucidum which separates it into two spaces. Again, we are led to believe that at 20 weeks, this was actually in place. Very confusing. We still have so many questions and very few answers, but the doctor Brian spoke to yesterday made the condition sound less lethal than the neonatologist we saw on Monday. To be fair, the neonatologist didn't know a whole lot about our situation and was offered to us as a resource if we wanted it. At the time, we just wanted to talk to whoever we could, but he didn't have a lot to offer. The perinatologist acknowledged that there is no guarantee of outcome, but most likely the condition itself will not be lethal. Statistically speaking, we were given a less than a 1% chance of typical functioning, a 5% chance of mild delays, and a 95% chance of moderate to severe delays. Comforting? Not really, but still better than we thought on Monday. When baby arrives, depending on condition, an MRI will be performed to determine how much brain matter is present and in what areas. Again, provided there is hope for any quality of life, a shunt will be placed into the brain which will drain into the abdominal cavity. This will be a permanent fixture for life. Blood will also be drawn for genetic testing. That's about all we know at this time. We will likely get to know the NICU life very well.

One other big question we wanted answered was the sex of our baby. The idea of finding out the sex during delivery pretty much lost all of its luster once we found out about our poor baby's condition. We just want to mentally prepare for every aspect of what's to come. Care to venture a guess?

It's a....

...

...

...

...

...

...

...

...

...

...

...

GIRL!!!!!

Seriously, you could knock me over with a feather. I really can't believe we are having a girl. We are terrified of everything to come, but we're taking it a day at a time and looking forward to meeting our little Elodie Lee. She was gifted to us miraculously, and we pray we will see many more miracles through her.

Devastated

This is going to be brief, and I'm not sure that I'll come back to this space for a while. Yesterday Brian and I met with the high risk perinatologist. She performed the ultrasound and delivered the grim news. We won't know specifics until after the baby is born, but her guess is that sometime since our 20 week anatomy scan, our baby suffered a serious brain bleed. It appears to have significantly impacted his/her brain development, and there is a very large amount of extra fluid present in all areas. Baby's body is also measuring small, although at this time we're not sure if we are just having a small baby, or if it is indicative of possible genetic abnormalities. I will undergo a c-section on Monday, August 18th to accommodate the size of the baby's head, which is part of the reason baby has had a difficult time staying head down. We will hopefully learn much more after the baby is born, but the prognosis is very poor. Most likely we are looking at a severely impaired baby in all areas of development, and it is also quite possible that baby will not be able to survive outside of the womb. 

Brian and I are obviously completely heartbroken and devastated. We are having a very difficult time helping Noah to understand what is happening. (Let alone ourselves.) That has honestly been the most difficult part for me. I feel tremendous guilt for excitedly preparing him to become a big brother, only to yank all of it away from him at the very end. He truly is the light in our life right now, and I have never been so thankful to have him.

Please keep our family in your thoughts and prayers as we navigate this difficult path. I hope to come back to this space after I have had more time to process everything that has happened.

37 Weeks - A Much Bigger Worry

Can I just say how silly and petty I feel for ever having worried about a breech baby or c-section?

Today was our appointment to attempt to turn the baby. I wasn’t allowed to eat or drink anything after midnight, and my appointment wasn’t until 11:00. To say I was starving was an understatement. When the first doctor came in to scan me, he asked how I was feeling. I replied with "hungry and a little anxious." A great combination according to Brian. The doctor did a quick feel with his hands, then started the ultrasound. As he had the probe over my lower pelvis, he asked what my thoughts were. I said I had no idea but wasn't hopeful, and what did he think? He thought baby was head down. Then he second guessed himself and scanned up under my ribs. He appeared super confused, and then a second female doctor came in. He asked for her advice, so she took over. After they got me into a flatter position, she confirmed that baby was head down. Hurray! The two of them seemed happy for us that baby turned on his/her own, then said the OB who was actually going to do the version would come in and possibly check one more time, and then we’d be free to go. The OB came in, scanned all over, confirmed once and for all that baby was vertex and in good position, and then left. One of the RNs came in to go over some basic info with me, and after 5-10 minutes the OB returned. She restated that baby’s head was down, and then, almost casually, dropped a fucking bomb on us. She told us that while she was scanning, she was concerned that the ventricles of baby’s brain may have appeared enlarged. She followed that up with the possibility that their machine just isn’t that great and they may have just had a hard time getting the best image with baby’s position. Regardless, she had already put in a request for us to see a MFM specialist tomorrow. They will do a far more in-depth ultrasound and let us know what they find. And then she left. Brian and I are pretty stressed out. It seems insane that everything looked fine at the 20 week scan, and then bam, just weeks from our due date we are facing a rather serious birth defect. From what we’ve been reading, they usually catch something like this at the anatomy scan. It’s crazy to think that such a huge issue could go unnoticed throughout a pregnancy. If there had been no concern about a breech presentation, no one would know anything until birth. And that’s so scary to me, because if baby really has hydrocephaly, a vaginal birth can be quite risky. Sometimes I really don’t think they monitor women enough during pregnancy. Would it have prevented this? No, but it sure would have been nice to be better informed a whole lot sooner. Well, I think if I continue in this vein, I’m going to just start rambling, so I’ll stop. Please keep our baby in your thoughts and prayers.

How Far Along: 37w0d

How Big Is Baby: BabyCenter would tell me that baby is somewhere around 6 pounds and 18-19” long. The food comparison is a bunch of swiss chard. Once again, I have no idea what that is.

Sex: I continue to guess boy. The first doctor who examined me today said he got a look at the baby’s goods and asked us to guess. I didn’t read his facial expression when I said boy, but I feel like with how grainy some of the images were, it would have been easier for him to see boy bits rather than girl bits.

Symptoms: Continued Braxton Hicks contractions. Nothing else is really new.

Food Cravings/Aversions: None I can think of.

Belly Button: Out.

Sleep: This baby has truly blessed me with good sleep throughout my pregnancy. Aside from some anxiety-related insomnia early on and while in MN, and the readjustment to high altitude after our vacation, I have never had trouble sleeping through the night. Thanks baby!

Stretch Marks: I don’t think anything new has sprung up yet.

Weight Gain: Somewhere around 30 pounds so far.

Maternity Clothes: Yes.

Movement: Baby continues to kick away in there. I still feel several bouts of hiccups per day.

What I Miss: Being able to walk, sit down, stand up, and roll over without sharp pain in my pelvis.

What I’m Looking Forward To: I guess I’m not “looking forward” to my appointment tomorrow, but I definitely want to know what we’re facing here.

Best Moment This Week: Finding out baby is head down. We got to enjoy that news for about 5-10 minutes.

Milestones: Baby shifted head down, and some websites consider me “full term,” although it seems that the new consensus is that 39 weeks is really considered full term these days.

The Bump: