Yesterday should have been my blog post for my 21st week of pregnancy...instead today I'm documenting the events that lead to Jack's birth at 20w1d. Part of me wants to forget and part of me wants to hold onto everything prior to our vacation forever. I'm considering this a therapeutic means for me to cope so I'm not holding back details.
We got back from vacation late on Sunday, December 15th. It was the best vacation we've had in a long time, very relaxing and we met a lot of interesting people. I was happy to come back though because we had Jack's 19 week anatomy scan the next morning and I was anxious to see him again. I shrugged it off as being paranoid but somehow I felt like something was wrong. I hadn't gained much weight and I wasn't feeling any movement whatsoever.
Monday we showed up at the MFM office for my scan. We had to have the scan done there instead of the OB because of my Factor V Leiden. Right off the bat I was nervous because when they took my bp it was elevated. Just coming off a vacation and excited to see your baby doesn't raise your blood pressure. When the u/s tech started the scan I started getting more concerned with Jack's lack of movement. He was stubborn at his 15 week peek a belly scan but this was more noticeable. After awhile, the tech said she wasn't able to get quite a few shots and would have the MFM come in to check on me. If she wasn't able to get the shots she may have to have me come back later for a repeat. When the MFM came in she scanned around for a little bit and then laid the news on us. Jack had something called Dandy Walker. Basically the "bridge" that connects the hemispheres in the brain was completely missing. He also was labeled as IUGR (Intrauterine Growth Restriction) and put at 2 weeks behind growth. She was also concerned that she wasn't able to get a good look at his heart to confirm it was formed and normal. We were given the option of an in office amniocentesis to determine if Jack had genetic issues. If that came back positive, we would at least know that he'd be facing multiple impairments at birth. We were given a name of a geneticist and advised to get a second opinion. The MFM wasn't concerned with my bp at that point but I did make a note to ask the next Dr. we saw to get their opinion as well.
Tuesday I was supposed to go back to work but just couldn't. Jim and I were so upset that our son could be facing severe disabilities. Unfortunately with DW, there is no way to know what issues your child will have until they're born. However, with his IUGR and slow movement we weren't too optimistic. We decided to get the second opinion at University of Chicago on Thursday, have a fetal MRI done and maybe an echocardiogram. Plus, we'd wait for the amnio to come back to see if there were genetic issues as well. The MFM we saw suggested we may want to consider terminating the pregnancy which totally ripped out my heart just thinking about.
Wednesday and half of Thursday I went to work. It was nice getting out and getting my mind off things but still a really long day and half.
Thursday afternoon we headed to meet the MFM at University of Chicago. They started us with a detailed u/s, we met with the genetics counselor, then with the MFM herself. Basically the u/s went the same as Monday he was in one position and wouldn't move for the tech. The genetics person basically told us what we already knew on Google about Dandy Walker and couldn't give much more info. The MFM reiterated what we've been told....without a doubt he had DW and we couldn't know for sure what the repercussions would be. However, with his delayed growth she was very concerned because the odds of him surviving until May were slim. In addition she said that she, however, was concerned about my blood pressure. I hadn't given a urine sample nor bloodwork so she wasn't able to make a determination but she advised that we go downtown to the hospital and get looked at for possible preeclampsia just as a precaution.
We stopped at home and picked up a few items just in case I was admitted, then drove downtown to University of Chicago. We arrived in Labor & Delivery at the Triage desk where they were expecting us and took us back to the triage room. I was given the standard gown to change into and gave a urine and blood sample for them to check. They said it would be about an hour so we just had to wait so Jim and I watched a few episodes of "Duck Dynasty" while we waited. In the meantime, they brought in a "roommate" and placed her in the next bed. All she did was complain about how she had been at the hospital since 3pm and didn't know why she was being admitted to the hospital. The nurse was asking her questions and since there is no such thing as privacy in triage we learned she was 32 weeks and this was her first baby she decided to bring into this world on purpose....her other two were aborted. I believe it was about then I began to cry and haven't stopped since. She was told she was under observation for preeclampsia (same thing I'm being looked at for) and that the only cure for it is delivery. This woman started wailing about how it was too early for her baby....trust me, at 19 weeks I wish I could have traded places.
Finally a doctor came in and told me that yes indeed there were proteins in my urine and it did look like early pre-e. I sobbed. Not all my bloodwork was back in yet though so they were giving me a room on the OB/GYN floor for an overnight observation. A few hours later, still waiting for a room, another doctor came in to check my vitals. She said the bloodwork was normal...they didn't think I had pre-e but they were still observing and going to do a 24 hour urine catch. Suddenly I just realized what THAT meant....I wasn't going home in the morning for sure.
Friday morning the OB/GYN dr. on call stopped in. She still wasn't quite sure what to make of my labs....they weren't awful but they weren't normal either. I was still doing the 24 hour catch until 4:15 Saturday morning anyways so they'd be in every 6 hours for bloodwork and vitals. Every 6 hours we watched the bloodwork get worse and worse. My platelets were dropping quickly, my uric acid climbing, my creatine rising as well as my blood pressure too. We asked if we could speak with the neonatologist about babies with Dandy Walker, as we were still convinced we had a choice on carrying full term. We also asked to have a fetal MRI, a fetal echocardiogram, and in case of last resort we wanted to speak to someone in Family Planning about the process of having a D&E performed. The only person that actually contacted us was Family Planning and when the Drs. came back and I told them I spoke with her, they immediately asked if I'd scheduled the D&E for Monday. I started to cry because it was pretty clear they were not pushing for a continuation of pregnancy.
By Sunday it was clear that my health was in distress and at that point there was no option for us other than to have the D&E performed. The OB called me NPO (nothing by mouth) at 8am since I needed to have a completely empty stomach and they intended to do the D&E that night. They soon transferred me to the Labor & Delivery floor and I immediately broke down looking around at all the things in the room. This is a room where babies are born....alive....healthy....and go home. My baby isn't lucky enough for any of that. Early afternoon they gave me a big dose of some morphine like medication and started placing the laminaria sticks and misoprostol up the who ha. It wasn't the most pleasant experience but not quite as painful as having them removed 6 hours later. When they came back for that, I was so hopeful my cervix was dialated enough to have the procedure that night. Unfortunately, it had only opened up a small bit and they'd have to replace the laminaria sticks and miso again. The only saving grace about delaying this event was the fact that I hadn't eaten or drank anything all day and now at least I could have some water and dinner. In a matter of 1/2 hour I probably gulped down 80-100oz of whatever I could get my hands on.....ginger ale, coke, water, etc.
When the drs. came back in to replace the sticks, I begged for them to give me a rest since having them removed was the most god awful thing I think I've ever gone through but they said that with it being the holidays, they couldn't guarantee OR time later in the day and they'd have to replace them that night. It was about then that the overload of fluids on an empty stomach took over and I began projectile vomiting into a bucket they gave me. Eventually I agreed to let them put them both back in that night as they told me it wouldn't be quite so bad since there was a slight dilation of the cervix plus the most painful part, having them removed, would be done during the D&E while I was sedated.
Monday morning I woke up. My bed was wet. I cried because I knew what was going on...I almost thought that maybe I wouldn't tell the nurse about it in hopes of it just not being real. Eventually I thought that was a stupid idea because I didn't want to randomly have the baby without anyone from the OB team in the room. I told the nurse, she checked me out and yes in fact my water had broken. I sat in my bed for a little while, all the while pushing the pump button for more drugs every 7 minutes. My pain was so bad, I asked Jim to set the timer on his phone for every 7 minutes so I knew how much longer I had before the button could be pushed again. Finally, the OB doctors came into the room to examine me, Jack was already moving and ready to be delivered. By this point, there wasn't an option for a D&E we had to answer a bunch of questions. #1) We didn't want to see him, hold him, or have pictures with him #2) We did want his footprints #3) We did want an autopsy ....followed by signing all kinds of paperwork which I'm not sure I was legally in a right frame of mind to do so being on that drug pump. Soon after, Jack was born, at around 8:30am. Jim said he didn't see him but he saw them take him away in the blanket. Drugged or not, I'm glad I didn't see that. My memory of those few days are messed up by the drugs but I do know that at one point I started hyperventilating and the doctors all rushed around me because I scared them so bad. I think I would have had another reoccurrence of that moment had I seen them take him away.
I don't remember falling asleep but apparently about an hour went by when the OB drs. were back for more fun....removing the placenta. The laminaria sticks were still up there and were holding the placenta back from coming out so she began removing them. Since I wasn't able to have the D&E, they had to be manually removed now that Jack had been delivered. Yet again, most painful thing ever I just kept asking how many more she had to pull out and if she was almost done. It could be the drugs but I don't think anyone ever would answer me when I asked that question, which just upset me even more. Once the sticks were out they began tugging and pulling trying to get the placenta out but it just wouldn't budge. They tried placing the miso in my rectum because apparently this has been known to make the placenta move. For me, this trick didnt work and just left another body part ungodly sore and they needed to still take me to the OR for an emergency D&C to remove the placenta.
Considering the fact that my entire body was swelling from the edema (my hands looked like Mickey Mouse gloves), getting an IV into my already non-existent veins proved to be a challenge. The night before I delivered Jack, the nurse asked someone from anesthesiology to bring the Doppler and find a vein to have a new IV put in. The best she could find was in my thumb and we found out during the D&C that whatever she put in me was too small and they needed to redo the IV (my 3rd IV of the week). At this point, they were drawing blood for bloodwork from my feet because my hands and arms were so badly bruised and used up so I was concerned about how they'd get another IV into me now. The anesthesiologists came for me to take me to the OR and the head of the team was complaining about the shoddy work someone did on me....which at that point in my drugged up stupor I decided to speak up. I said, "I know who did this....anesthesiology put this IV in last night". To which most of the team started laughing and I didn't realize why. She leaned down over and said "Shhh....you just ratted someone out. These people are all from anesthesiology". I looked around and said , "Its ok, the girl who did this isn't here" and that is the last thing I remember until waking up in recovery with my Mom and Jim sitting by my side. I could barely talk and was still feeling really loopy, I don't know why people do drugs because those few days were the worst being so out of control of myself.
Soon enough a wheelchair was brought to me, Jim went home to get a good nights sleep, and my Mom followed the wheelchair pusher to my new room in the new wing of the hospital. My oh my was it nice!!! We had dozens of movies we could choose from, huge windows with a skyline view of the city, and my mom had her own private area with a couch and her own flat screen TV. The care, however, was lacking despite how nice the room was. We got there around 7pm, shift change, ok. By 8pm we were still waiting. My mom had to track someone down and pull them out of report so that I could order some dinner from room service (yes , they had room service....the whole hospital in fact) because they never changed my room number in the system. Then, in the middle of the night I had to go to the bathroom. By this point, the edema was slowly making its way out of my system and I was filling up the hat in the toilet every hour to hour 1/2. The nurse comes in, helps me out of bed, wheels my IV station to the bathroom with me and says "If you need anything just call"....as I'm yelling after her that no, I needed help but she was already gone. The pad fell out of my underwear and I was so sore that I couldn't lean over to even pick it up....not that I'd put it back after being on the floor. Then, of course, I filled the hat and was sitting in my pee. I just started crying and when the nurse came back I told her I'm crying because you left me to sit in my pee and lose my pad. The CNA was there at that time too so she gave me two squares of toilet paper, told me to wipe myself off, and the two of them helped me back to bed.
The next morning, Tuesday/Christmas Eve, my morning nurse came in to check up on me. She obviously didn't read my chart completely because she says, "I'm having the same thing done as you had next month. You'll have to tell me how your recovery time is". The bitter infertile angel mommy snark in me bubbled up right to the tip top of my lips to ask her if she planned on delivering a 20 week old baby and having a D&C to remove her placenta also....but I bit my lip and didn't say anything. Finally they were ready to discharge me and that same nurse began going over my discharge instructions. She came to one part about post partum depression. She looked confused as to why that was on there, again a reason why I don't think she read my chart. She says if I start feeling depressed, because us females and our hormones sometimes it happens, then I should call someone. Us females and our hormones???? I'm sorry but losing your child is a little different that a fluctuation in hormones. They sent me on my way with pain meds but nothing else. My blood pressure never went to normal it was stable in their opinion and let me go.
It was nice to be back home and sleep in my own bed, although I was still really sore and it was tough moving from the couch to the bathroom or to anywhere else. My blood pressure still was high but stable and we were watching it closely. Christmas Day my friend from Louisville who was in town for the holidays came to visit. He stayed a few hours and we played Scrabble and then when he was about to leave I started feeling a little off. I sat down while he talked with my parents but when he left I asked my Mom to take my bp again as I had a headache with tingling in my lips. Sure enough, it had spiked and was now 170/100 instead of the 140's / 80s that it was before. My Mom called the doctor who discharged me and he told her to take me to the nearest emergency room but gave her a phone number to call when we got there. He said the on call person would talk to our ER's doctor and catch them up to speed. When we got there, University of Chicago pretty much said I was their problem now and said they discharged me and I was stable so now its up to them to fix me. Here we go again...
The nurses couldn't get an IV in me, big shocker after my week. After 5 sticks, the third or fourth nurse was finally able to get one going on me but she wasn't able to pull the blood from it that was needed for the labs. Yay, arterial stick for me. My wrist is all black and blue now from that. They also started a magnesium drip on me and brought in the padded covers for the bed as they considered me a seizure risk at this point. Once the labs came back normal, they took me off the mag and admitted me to a room for observation. I met with the on call OB who was shocked that U of C would just release me with that blood pressure and not give me any meds for it. She started me on one called Procardia and wanted to see what the low dose did to bring my pressures down. Of course, it sort of worked but not good enough so I ended up spending another night at the hospital with a higher dose of the meds. Thankfully, that worked well enough to get me released at least as I was and am completely sick of hospitals.
Today has been two weeks since we learned of Jack's Dandy Walker and one week that God made our choice for us and called him home. We came home to a half together nursery and a closet of clothes and diapers/wipes/etc.....this is probably the toughest thing I've ever had to endure in my life and hope that this doesn't ever happen again. We have an appointment this Thursday with a grief counselor and I found a group similar to Resolve but called Share. They meet in an open support group twice a month at the hospital where my OB was at, so not far from work. I really feel that both will help not just me, not just Jim, but us together as this is not something just one of us has to go through its for both of us together.
We did get the results back from our amnio and everything came back normal which is bittersweet. Maybe Jack would have been fine, why did this have to happen? Maybe Jack would have had severe issues and this was the best for him to not have experienced any pain in his life. The thought of being pregnant again sometime in the future scares the crap out of me. No one can say why this happened or if it will happen again or to what extent its all a crapshoot.
Needless to say, we have a long road of recovery ahead of us....physically and mentally.
