Love, Loss, Coronavirus, Disappointment and Bilirubin
Updated: Sep 15, 2021
This is a very long, drawn-out story that really begins around this time last year. While most of the world seems to be counting time since we entered a pandemic, I have been counting time since my grandma died. It was the hardest thing in my life that I have ever had to deal with; yes, worse than almost dying while delivering my fifth child. She was one of the most important people I have ever had in my life, and navigating the day-to-day knowing that she is gone forever is something I don't think I will ever fully come to terms with.
Love and Loss
I spent the better part of that year having multiple miscarriages. In the past, I had experienced an early loss here and there. They are always devastating, but when you don't use birth control, they come to be a natural part of life. Last year however seemed to be the peak of pregnancy loss for our family. I started ovulating fairly quickly after Griffin was born and the positive pregnancy tests started rolling in. One cycle after another came and went, most of them marked by what is called a chemical pregnancy - an early loss that occurs around the time your period would have arrived anyways.
The worst of these monthly miscarriages managed to hang on until closer to 7 weeks. This one hit us very hard, especially when it became evident that I had been carrying not one but two precious babies. We never really moved on from that one.
In early December, yet another test returned positive. It didn't mean much after more than a dozen losses, so we sort of went about our lives without acknowledging the significance of it as we would have before.
The morning sickness struck out of nowhere and was so severe, we couldn't ignore it any more. I was struggling so much emotionally at the time that I was in a sort of denial that this pregnancy was going to stick around while simultaneously navigating the most extreme symptom of pregnancy one could experience in the first trimester. I was mostly bedridden, and although I didn't actually puke, I have since wondered if there is a version of hyperemesis that does not involve the vomit aspect (there is, and I am sure I had it). I basically stopped eating or drinking and couldn't sleep due to nausea that never went away. Even taking a shower made me so sick I couldn't force myself to do it. I spent the better part of every day laying on the couch with my eyes closed, or on days I couldn't physically make it to the living room, I just stayed in bed all day. With seven children to care for, I was an absolute mess. I had to rely on the oldest children to do household chores and feed the younger children. I was entirely incapacitated - and this went on for months.
Fast forward to April and I was just beginning to feel a tiny bit less nauseated. I had only wrapped my head around this pregnancy resulting in an actual baby and so Josh had made an appointment for me. Yes, I waited until April to see a doctor for my pregnancy. Between my poor mental health related to my miscarriages and my inability to function due to sickness most days, we hadn't really told anyone we were expecting aside from my kids.
We took the ferry to Juneau as a whole family, trying to get out of our little "funk" and enjoy a little mini-vacation. We found out we were having another boy, and that he and I were otherwise healthy. My anxiety at this point had gone up significantly; around the time I started to see a decrease in nausea, I started to experience an over all feeling of discomfort and malaise. I knew I was probably anemic, low on vitamin D, and chronically dehydrated but I suspected that my lab work would return a diagnosis of cancer or something. It didn't seem possible to me that someone could feel so run down, sore, and sick without having something seriously wrong. The trip to Juneau did raise my spirits though, and the perk in my mental health gave me a renewed outlook. Even if I was abnormally sore and out of breath for my second trimester, things would start looking up.
And then we all came home from Juneau with Covid. Coronavirus
We wore masks and washed our hands and did the social distance thing like we were told. The only time we let our guard down was when we took our kids to the park. The day we got home, Josh expressed that he wasn't feeling great. We got our Covid tests, which all came back negative, and by the time everyone had unpacked their suitcases, the kids were beginning to express a general feeling of yuckiness.
The call came in that all of our tests were negative and by the next morning, the yuck had hit me as well. Josh still had to go to work (yes, he HAD to work, and that meant still going and greeting every plane and boat that came into town. He came face to face with every person who entered our town) but the kids and I were spending the day laying down. They mostly watched movies from the couches and I stayed in my room. It was more mild than most flu bugs we have had and if I remember right, there was very minimal puke. The worst part was by the third day, when everyone went back for their second test, I felt like my chest was full of congestion. It was a little hard to breathe first thing in the morning and I had to cough quite a bit to clear my airways. I was beyond exhausted, but the kids and Josh were feeling much better. I skipped my repeat Covid test while Josh took all the kids back for theirs. It didn't make a difference - if one of us had Covid, I was confident it would be caught on one of the tests that got taken.
Again, the tests all came back negative.
Even though everyone was feeling mostly better, we continued to quarantine while a few symptoms seemed to be lingering. I kept the kids' friends away and we stayed home, hydrating and taking vitamin C. A full ten days passed and I let Rowan go hang out with a friend on her birthday. The whole time my sister insisted we go get yet another Covid test. I heckled her. We were tested twice, and this was absolutely NOT severe enough to be Covid. Besides, what were the odds that we catch Covid the one time we traveled in the last year? Not to mention, last I checked, there were still regular illnesses that one could catch.
Josh text me out of the blue that day and told me he had tested positive and we all had to go get tested yet again. It had turned out that another positive case popped up in Hoonah, and it was my father. For reference, my father lives in an attached apartment to us - but we had not had any contact with him in months. It was impossible for us to have gotten it from him, but when it was revealed that the positive case was basically next door to us, Josh decided to test one more time.
We had all been feeling better for days aside from me and the lingering fatigue. Still we climbed into the car and drove to the clinic to get cotton swabs rammed up our noses. Every test came back positive except for Jericho, but he had been sick as well. His was most likely a false result. We were under strict orders to quarantine for ten days, including Josh. It was kind of silly because we had already quarantined for ten days and were no longer sick - or even contagious. In any event, we did it, and I spent most of that time sleeping as the fatigue was overwhelming. A few of the kids seemed to have a yuck day here and there which I was told is normal during the second week of recovery. The town of Hoonah went nuts seeing the count of positive cases go from one to ten in a single day, so I let everyone know it was us so they wouldn't worry so much. I was given many well-wishes from concerned community members, so I tried my best to explain that we were all fine and were very much recovered from it even though we were stuck in quarantine. We had many offers to bring food and medicine, and I am very thankful to all our friends, family, and neighbors who helped us out and expressed concern for us. We felt very loved through the whole ordeal.
Life eventually returned to normal and as I entered into my third trimester, I realized that I had not been blessed with my normal reprieve from the pregnancy blues. Not only was I still slightly sick, and fatigued, I had already reached the point of being extremely uncomfortable. I had pain in most of my joints and was so out of breath I was sure it meant something was wrong. The second half of my pregnancy was as miserable as the final month usually is. I was minimally active and spent a lot of time on the couch. When I tried to get up or be active in any way, I was so breathless that I was dizzy. My sciatic nerve would wrench pain from the middle of my back all the way down to me knee. I couldn't even crawl in or out of bed without groaning in pain. Don't get me started on the heartburn and indigestion that had been around since the first trimester. Needless to say, I wanted to be done. I had not slept in months. I couldn't really cook, I couldn't clean, I could barely keep the kids doing their school work... It was the most miserable time of my life. I was depressed, anxious, and just felt like everything was hopeless. Josh picked up the slack so much and the kids' willingness to contribute while I was incapacitated is the only thing that kept us afloat. It felt so unfair that after seven average pregnancies, I was suddenly hit with this one. I had been sick before, tired, in pain, and checked all the other pregnancy boxes; but there was nothing like this. I kept thinking that I would be screwed if I went into labor because I honestly didn't think I had the strength or energy to survive it. I had almost made up my mind before the third trimester that I would need to have a C-section for my own sanity and safety.
As my due date loomed, my anxiety ramped up to unbelievable proportions. Nearly an entire year of absolute turmoil and physical health that had tanked long before had me still in a form of denial that I was actually going to have a baby at the end. I was told I could not deliver in Juneau because of my "high risk" status with my bleeding disorder and prior C-sections, but going to Anchorage seemed completely impossible. We had no one that could take potentially several weeks to stay with our kids. We couldn't take them with us. I didn't want to leave them at all, and I was in panic mode almost every day thinking about how I would have to travel at 35-36 weeks pregnant. I was expected to spend the last month or so of my pregnancy alone in a motel in Anchorage with no support. I could barely walk already, and had spent the last two months of my pregnancy basically eating only one meal a day and trying to choke down enough ice to stay hydrated. Things were absolutely nightmarish and I finally hit my breaking point. I knew that there was nothing I or anyone else could do to get me on a plane to Anchorage.
It felt like I woke up one day and was suddenly 34 weeks pregnant with no plan. We were long past the point when we should have had everything figured out, but I had completely shut down and knew I had no options. I couldn't get on the plane, I couldn't deliver in Juneau, and I certainly couldn't deliver in Hoonah. The more pressure that I felt to figure something out, the more I just shook my head and said no. Josh was in contact with my sister and was working on her potentially coming to Hoonah to help. I think that even though he has always been able to be my support person and remained strong for me, the whole situation (the whole last year, really) had started to break him down as well. He knew he needed someone to be a support for him just as much as I did. We spent a lot of time hashing things out, with me getting upset, crying, denying that I could deal with any of it, and then me reverting back to being unable to essentially function. Seemingly trivial events left me devastated - when the clinic I had seen in April called me and said they wanted me to travel to Anchorage in a few days when I would be about 35 weeks, I completely lost it. I dissociated most of the following two days and refused to discuss our delivery plans.
Things finally seemed to turn around when, just a few days before I was 36 weeks, I made the most hopeful discovery; there was a ferry that would go from Juneau to Whittier, putting me within driving distance of Anchorage. I checked the dates and each leg of the trip and it seemed unconventional, but absolutely a possibility.
In a few days, the ferry would go from Hoonah to Juneau. We could stay in Juneau over night, and then get on another ferry from Juneau to Whittier. It was a 40 hour ferry, but I love the ferry and didn't mind. From there, we could actually take a train into Anchorage, which seemed like a lot of fun. If we played our cards right, I could take Dash, my 12 year old, with me to help me out. I could be in Anchorage by 37 weeks and when Josh was able, he could fly up and meet us. My sister would come around the same time to watch my other kids and everything would come together just perfectly. For the first time in a really long time, I felt optimistic. We made the plans on a Friday and I would be leaving on Monday. My anxiety began to subside and I kept thinking it was almost over, and soon I would be coming home with a baby. Everything felt like it was going to be okay.
Medical can be very complicated in Alaska. Since most people have no choice but to travel to receive any degree of specialty care, Medicaid pays for travel, lodging, and food for people that have to relocate. The trouble comes when they require certain parameters to be met and a referral from your provider. Unfortunately, my "provider" was a woman I had only ever seen once and she really hadn't done much for me. We had already had issues with that clinic calling me and refusing to acknowledge that I do not take phone calls because of a disability. At one point in my pregnancy, Josh answered the phone for me and let them know that I couldn't talk on the phone due to auditory processing issues. They refused to tell him who they were, and just kept saying, "have Abby call us back." He finally yelled at her that no one can call her back because we had no idea who the hell she was or where she was calling from. She stated that she was from "a clinic" or something like that and reiterated that I needed to call back. Then she hung up.
It was no surprise when this clinic, or more specifically, the provider I had been assigned, started creating problems for me. When Josh let her know that I could not get on an airplane due to anxiety, she refused to entertain the idea of me taking a ferry. She claimed that 40 hours on a ferry was far too dangerous - despite being told that it was going to be either 40 hours on the ferry or I deliver a baby in Hoonah. She made it clear she would not give us a referral that would allow us to take a ferry, no matter what the situation, and suggest Josh talk me into taking medication to get on a plane. That might seem reasonable to some people, but I was not at all on board with that option. I do not take medication under most circumstances and the fact that my disabilities had been ignored by these people repeatedly had me so flustered I couldn't even think straight. Josh was more than accommodating and knew I would not be getting on a plane. He knew that with the way our year had gone, I couldn't physically or emotionally handle being forced onto a plane, medicated. We were forced to pay out of pocket for the travel or else risk having a baby at home where we cannot get proper medical intervention if necessary.
Pressing forward, we got everything ready and Dash and I headed out on the ferry to Juneau when the time came.
I won't lie - when we first started off, there was a certain pep in my step. I was having a great time with my son, who is so helpful and attentive. He helped with the luggage, he went and got snacks from the vending machine, made extra trips to the cafeteria to get ice water; we spent time playing Among Us and eating meals together and just lounging around. A few hours into the trip to Whittier, we decided it was time to pamper ourselves with a nap - something that doesn't always get to happen in a house full of children.
When we woke up we immediately headed down to the cafeteria for lunch and were surprised to hear the announcement that we were almost arriving at the Juneau/Auke Bay terminal. We assumed it was a mistake as we had left Juneau and should be a quarter of the way to Whittier. I checked my phone and the location service was still showing me "local Juneau weather." About ten minutes of absolute panic later, we solved the fateful mystery. The engine was leaking something and so we had turned around and gone back to Juneau.
At first, it seemed like a simple 6 hour delay. After a couple hours, we were informed that we didn't know how long it would take to assess the damage. By the next day, we were told it could take more than a day to get the correct part and get it fixed. Then we were told the part was located, but we didn't know when we would sail.
We didn't complain too much because our room had been upgraded to a suite that is normally $500. They were also giving us food vouchers, so we were eating for free for every meal. On the other hand, every day that went by made me more and more nervous about when I would make it to Anchorage.
After a few days on the ferry waiting for definitive news, they made the announcement that sailing to Whittier was cancelled. I was stranded in Juneau with no way to get to Anchorage.
If your response to reading that last part was, "well just get on the plane," I suggest you educate yourself on mental health issues. More specifically, you brush up on your knowledge of anxiety.
These situations are difficult for everyone, but they are exacerbated when you are autistic. I find myself desperately needing some sort of support because I can't think straight when I am caught off guard this way. I was really wishing that Josh was there. Once I told him what was happening, he started making phone calls. He doesn't always know exactly what to do, but he always steps up when I need him and he figures it out when I can't.
At this point, he decided it was pertinent that my less-than-supportive OB recognize my disability and all that comes with it and start helping us move towards a better plan. He called her and explained how I had been on the ferry and now it was broke down and I couldn't go home and I couldn't get on a plane to Anchorage. She suggested, once again, that he medicate me and get me onto a plane.
Of course my husband told her that he was absolutely not comfortable trying to coerce me into being drugged and forcing me onto a plane.
This was point where she told him to urge me to go to the Emergency Room and get evaluated, because he should have me sent to the mental health ward.
Yes, you read that right.
An OB whom I only ever saw for one appointment (I didn't even know her name) tried to convince my husband to have me committed because I was having severe anxiety about getting on an airplane.
Needless to say, this really sent me over the edge. I started hyperventilating and went into a full-blown anxiety attack. If anyone is wondering what it is like being an autistic person trying to navigate things like medical care, this is not uncommon. I mean, it's certainly not common to have an OB try to get you committed, but the lack of advocacy and the total dismissal of autonomy is absolutely common. Not to mention the fact that treating someone with diagnosed disabilities this way is completely appalling.
In the midst of all this, my poor son, Dash, is witnessing firsthand how unfair the medical community can be to those who struggle to advocate for themselves. The amount of anxiety the whole thing put on him is also unfair.
It was fairly soon after Josh told me about all of this that the clinic my OB worked for started trying to call me. After being told on multiple occasions that I cannot talk on the phone, they were desperately trying to get me on there. They didn't just call once either - as if it was their goal in life to actually stress me to my breaking point, they called repeatedly over and over. I started hanging it up and they continued. After about ten calls, one immediately after the other, Dash recognized my distress.
"Just answer it and tell them to fuck off and then this will be over!"
He was right, and I felt encouraged by how much he cared. So I answered the phone, and the woman on the other end standoffishly said, "hello?!"
I responded with, "Stop calling me! I don't wish to speak to you and I do not appreciate you calling me repeatedly! You are making my anxiety worse and this feels like harassment! Do NOT call me again!"
And then I hung up, and they didn't call back.
Soon I got a test from someone at the hospital. I think she said she was from case management, and she wanted to help us figure out a plan. I was pretty apprehensive and honestly starting to feel a little paranoid. I have heard plenty of horror stories of people being taken into custody for less, and after the clinic assaulted me with phone calls, I didn't know what to expect. It was incredibly unprofessional behavior and for someone who is already somewhat in emotional distress, it was really scary for me. They knew I was on the ferry and I felt like they would be the type of people to call the police and say I am a danger to myself. Dash assured me he would not let anyone take me into custody, which was really sweet of him but also unnerving that my son would ever feel like he has to say that to me.
The case manager continued to communicate with me via text after I told her that I can't really due phone calls. It seemed like she was one of the first people who genuinely wanted to help, and genuinely wanted to listen, but she also asked if I was willing to get a ride down to the hospital so we could go over some paperwork. I will be completely honest here - it really scared me. Not only was it a scary situation to try to make plans without someone I trust there to help, but I generally was reluctant to go anywhere or do anything after the behavior from my OB. On top of that, I felt like I was being paranoid for even feeling that way. I let her know that it would be best for me to come in after my husband arrived in Juneau - which we decided would be sooner rather than later.
I was almost 37 weeks pregnant, stranded in Juneau where I was told no one would "allow" me to deliver, and had no plan for the birth of my baby. Saying I was stressed out would be an understatement. I needed Josh and I needed him there with me immediately.
We had a video conference with my hematologist team while Josh was still in Hoonah and I was trapped on the ferry. They agreed that the best course of action would be to find an OB in Juneau who would agree to take me on, and they would assist us by putting together a treatment plan and letting the OB know that in their professional opinions, I would be safe to deliver in Juneau.
Josh showed up a few days later, on a monday, which was actually a week to the day that I had boarded the ferry. We got a motel, again, out of pocket, and had an appointment scheduled with a different clinic for the next day. I was so nervous that I would be waiting all this time just to be told no, even though we had no back up plan.
Overall the appointment went well and I feel like my new OB really listened to me and for the first time, everything was taken into consideration on a case by case basis, rather than being shut down because it sounds like it is against policy. There was a lot of discussion about whether I would possibly be comfortable trying different types of medication to help me tolerate a flight, and when I said I couldn't do it, she didn't pressure me. It seemed like she was really covering all the bases, because she probably knew that they could either choose to help me with a plan, or deal with me when I come into the hospital in labor down the road - without a plan. Of course, my intention was never to strong-arm anyone into being my doctor. Realistically though, that is exactly how things would transpire if I didn't get some help.
We also hashed out the option to have a scheduled C-section. I had been leaning that direction anyways because I honestly didn't know how I could get through labor while I was so weak and exhausted, physically and emotionally. Plus, a scheduled C section is much safer than an emergency one, and Juneau is not very well-equipped for emergencies in childbirth. Sure, they kept me alive that one time, but I don't like to press my luck. The last thing we addressed was the possibility of being done after this. Again, my doctor was not the least bit pushy. Just because they make a suggestion that is hard to hear does not mean they are doing anything wrong. She made several valid points, such as the fact that I have had many children and if I had another Csection, it would be my third. I have had a few issues with bleeding, and I have had issues with shoulder dystocia. We told her that we had not really discussed it with each other, but we admitted it was something that had been on both our minds. Her suggestion was to make a decision sooner rather than later, because if I wanted a tubal ligation, it is easiest to do while you are undergoing a Csection.
We made an appointment for thursday to get an ultrasound and check on everything. I was not the least bit surprised to find that my fluid was low, and the baby was measuring big. I was measuring 40 weeks even though I was only 37 and the baby was measuring around 9 pounds. After the last two were ten pound babies, I didn't want to take a chance. Out of five vaginal deliveries, three were affected by shoulder dystocia. The likelihood of having yet another stuck baby was too high for my comfort. I wanted a Csection for certain.
We saw the doctor immediately after, and we continued to discuss a plan and how we would go about all of this. My A1C had come up high, so we talked about getting it down before the Csection. I would also need to pick up a prescription of Lysteda to take after delivery in case of bleeding. My hemoglobin level was 8, which is pretty low so I was asked if I would be willing to have either an iron infusion or a blood infusion. Of course I agreed, and we decided it could be done sometime next week. The plan, if she took my case, would be to plan a Csection for my 39th week. We would do it early in the morning so any emergency would be easily dealt with by calling in a LifeFlight. Her best estimate would schedule it sometime around august third or so. That was pretty much all that the plan entailed. My doctor was going to go in one more time and plead my case with the other doctors in her practice and let me know with a phone call the next day whether everyone had agreed.
The next day was TuB'av, the Jewish valentines day. It was also the day my sister and niece were flying in and I was so excited to potentially meet up with them for a little bit before they went on to Hoonah to help with my kids. We were nervously awaiting the phone call from the doctor with what she said would be their "final answer."
Josh and I decided to go out to brunch, do a little shopping, then come back to the motel room. We wanted to take Dash out to dinner at his favorite steak place that night. So we headed out to a fun little burger place around noon or so. Then we went to the mall to get yarn to finish the baby blanket I was knitting. The last stop was Fred Meyer so we could pick up my Lysteda prescription.
When we walked past the flower shop inside the store, we were stopped by the eccentric florist. She made us a beautiful bouquet from the tulips I had asked Josh for, and we headed out to the car.
Just as I opened the door, I felt a gush of fluid.
"I think my fucking water just broke."
Yes, those were my exact words. Josh didn't quite hear me, and I repeated it.
Then another huge gush of fluid confirmed it.
I was just over 37 weeks pregnant, and my water broke in the Fred Meyer parking lot.
In some ways, I was not surprised. So many things had backfired on us on this trip so perhaps I should have been a little more willing to accept that weird things could transpire.
For reference, I only had my water break on its own twice. First with Rowan, early in the morning when I first stood up out of bed. It was a classic shocking explosion of fluids that never seemed to end. Being an autistic person with severe sensory issues, it was probably the worst experience of my life. My water was leaking with Archer for a few days before I went into the clinic, but it wasn't the chaotic ordeal that it was with Rowan.
I also have almost always carried all the way to my due date. Rowan and Archer were both born on their due dates. Jericho and Griffin were a few days late. Ender was a scheduled C-section at 39 weeks, but I am completely sure he would not have been born before his due date otherwise. My only "early" babies were Dash and Royal, who were each born ten days early - putting them at the later end of 38.5 weeks. They were my second baby and my third baby, so I hadn't had an early baby in years. There was no reason at all to believe that Atlas was going to come early at all, let alone at 37 weeks.
As if the sudden surprise of my water breaking wasn't enough, it completely derailed all the plans we had been fervently making. We rushed back to the motel room which happens to be the hospital's guest motel. I had to wake Dash up to let him know what was going on, and I changed my pants, and we headed straight over to the hospital. I wasn't really contracting or anything and that was my only real comfort. I knew we had some amount of time since labor was not quite starting yet.
When we checked in and got to our room in triage, all the panic and fear hit me at once. I had no idea what they usually do if you are supposed to be getting C-section and your water breaks; or you were supposed to receive certain medical treatments prior to delivery. I hadn't even heard back from the OB whether or not they had decided to take me on as a patient.
The first blood pressure check made things so much worse. It wasn't just higher than usual for me, it was really high in general. It sent me into a bit of a panic attack, and when they checked it again after I was given time to calm down, it was even higher.
When they got me into a room I felt a little bit better. I still wasn't having contractions, so I just kind of chilled out waiting for a doctor to talk to me. He arrived and we decided we would just go ahead and do the C-section that night since I wasn't contracting or dilating. My sister arrived in Juneau while I was waiting for surgery.
I was pretty nervous to be honest; something about the fact that I nearly died the last time I had a C-section at this hospital really awakened the PTSD in me. Of course it was not the hospital to blame but it still brought back a lot of memories and a reminder of my own mortality. I was shaking as I signed all the paper work and walked back to get my spinal.
For a little bit, I forgot how nothing about this last couple weeks had been simple. I remembered it only when the anesthesiologist couldn't seem to get everything placed correctly. Every poke sent a shock down one of the nerves in my back. I would relay to him which side it was on, then he would adjust and try again. Then the shock would be on the other side. Josh would later count all the poke-holes around the golf-ball sized bruise on my back.
Once I was numb, I became very aware that there was no going back. I had chosen to deliver in Juneau knowing they might not be able to handle an emergency should it arise. Even though the Csection only took about an hour or so, I had three full blown panic attacks during the surgery.
Overall it went well. When they went to pull Atlas out, they found a shoulder instead of a head. He had turned transverse - which he did frequently throughout my pregnancy - and they had to put a bit of extra effort into twisting him out of my incision.
I craned my neck enough to see that his cord was huge. He was wide eyed and didn't make much noise, so just like his sister, his apgar score took a hit. He was just so curious about his new surroundings. Even though he had been estimated at 9 pounds, he was only 8. That's still pretty big for 37 weeks!
It was hours before I regained feeling below my waist, but as soon as I was wheeled into recovery I had pain in my lower back and on my right side. They gave me intravenous pain meds, which never agree with me, and I spent the next hour or so being uncomfortably high. When that wore off, I was in significantly more pain than my last C-section.
This is the point where I pause and let the reader know - I had a tubal ligation during my C-section.
It was something my husband and I both had on our minds during the pregnancy. When my doctor had brought up the possibility of us utilizing permanent birth control after this one, we were not offended and we didn't take it as fearmongering. We sort of nodded and told her it was something we had been mulling over, even though neither of us had ever mentioned it to each other.
It didn't take the doctor trying to convince us of anything. This would be my third C-section, my eighth delivery, and I am almost 34. I have had more complications each time, and I was hardly able to cope with being pregnant this time - physically or mentally. I have had one major hemorrhage and two minor ones. Three of my five vaginal deliveries were classified as shoulder dystocia. My babies are getting bigger and bigger (the last TWO were ten pounds!). I spent the better part of the previous year miscarrying. Most importantly, my water broke at 37 weeks. This baby was absolutely not ready to come out yet. I don't know if my uterus was just tired of all the work, but I have reached a place where I no longer feel like I can have healthy pregnancies. Of course, none of these things indicate that definitively, but I can honestly say that when you know, you KNOW.
After the appointment, we knew we were in agreement without even saying so. It was as if we had already both decided it was time to be done, and we were just too afraid to say it out loud. I certainly didn't want to have Josh undergo a vasectomy - the possible side effects scare me and there is no sense in him doing that while I am already having a surgery. If we decided to wait until after the baby came, we agreed that we would end up procrastinating and not doing it. There was also the risk of us glossing over how serious my complications were getting and that we would change our minds, forgetting how hard this pregnancy was for me - and then I would impulsively end up pregnant again. I signed the paper right before my C-section and went into it knowing this was my last time. It certainly wasn't easy to make a final decision and we didn't take it lightly. I am crying as I write this. Somehow though we both are 100% certain this was the right choice and the best for our family.
Back to the recovery room... Atlas started trying to nurse immediately and did so for the better part of the first few hours of his life. He looked so tiny for being 8 pounds, with his wrinkly skin and thin face. His eyes were huge and his torso was frighteningly long. He looked a lot different than our other babies.
Dash got to come in and as soon as he saw the baby, and immediately teared up. He took the baby from me and sat with him for almost an hour just saying, "I love him so much," over and over. The nurses were enamored with the big brother who cried. He ended up coming in and seeing the baby several times and the nurses were very impressed at how respectful and helpful he was. It made me very proud, to be honest. They even asked about him after he went home. I had three different nurses ask, "is Dash still here?" When I told them he went back to Hoonah, each of them sighed, "oh."
Atlas' blood sugar was a little low, and my hemoglobin was as well. For Atlas, we pushed the booby. For me, I got two units of blood. They had tried to get me to stand up but I almost fainted, and after the transfusion I was able to get up and walk around. It was incredible. I felt amazing for the first time in about a year. Atlas passed all his tests, but as the first day in the hospital wound down, his breastfeeding changed. He was more and more irritated at the breast and getting him to actually close his mouth to latch on was nearly impossible. I was not able to sleep more than a couple hours at a time because he seemed to always be hungry, but when I would try to feed him, it failed. A lot of the time he would cry and we would give him a pacifier just to calm him down, then he would sleep for several hours. Each nurse came in and assessed what I was doing but none of them could really help. I have fourteen years of breastfeeding experience, so I am certainly not surprised. The only thing they could tell me was, "sometimes pre-term babies take a while to figure it out." Not surprisingly, my blood pressure began to creep back up again.
By the second day in the hospital, I was becoming miserable. I am allergic to adhesives, so I was covered in rashes and varying degrees of skin irritation. I also had a catheter that has shifted because it was not able to be taped to my leg. Isn't childbirth beautiful? My blood pressure got high enough that I was given medication to help bring it down. I was already taking an entire handful of pills every time a nurse would come in, so one more didn't make much difference.
I was in a lot more pain than I figured I would be, and sleeping was beyond difficult. The morning that we were supposed to get released, I was mostly just excited to go back to the motel and hopefully get some sleep. The whole time we were packing up the room though, Atlas got more and more fussy. I couldn't get him to eat at all, and it seemed like he was only getting a few minutes at the breast at each feeding. We were on our way out the door when we realized the baby needed to be changed. We sat him on the bed and he became irate. He started screaming and crying and we couldn't get him to stop. It was the most upset he had been up until that point.
He continued to cry for the majority of the next two days in the motel room. Feeding him was a nightmare and most of the time he just didn't eat. We tried to give him a bottle of pumped milk but he was not latching onto that really either. While he did sleep a lot, he certainly wasn't eating enough. I wasn't doing well at all either. My incision was hurting more than it should be, and I still hadn't gotten more than three hours of sleep at any point. We walked the kids to the park about a block or two away and I couldn't walk back. I had an emotional breakdown and spent a good hour or two afterward crying. It was overwhelming recovering from surgery, wanting to be home with my other kids, having my last baby struggle with nursing, and just generally feeling like everything was too much. The dirty diapers became less and less frequent until it became concerning. Atlas had several "brick dust" diapers, which are pee diapers with a reddish hue from uric acid crystals. They signify concentrated urine or dehydration. Atlas reached a point that he was either crying or sleeping, and we started to see more signs of dehydration. His mouth was pretty dry and his dirty diapers became nonexistent. I think we all had assumed my milk would come in any minute and everything would quickly resolve, otherwise we would have taken him in sooner. In hindsight, we shouldn't have waited until his appointment, but we also thought that he certainly wouldn't be able to sleep if he was getting that little to eat.
We got out of the hospital on a Monday. Our check up appointment was on Wednesday with our ferry to go home on Thursday. The check up revealed that Atlas had lost 17.69% of his body weight. I tried to troubleshoot with the doctor about how to get him to latch on, and she tried to show me a way to stimulate his suck reflex - but he wouldn't go for it. I asked about having him checked for a lip tie, which I already knew he had, and she looked at it. She said it looked fairly mild and that was it. We were told that we should head back to the OB unit to get his bilirubin checked, and I cried right there in the doctor's office.
I do not cry, and I really don't cry in front of people.
I also had cried more in the last two weeks than I probably ever have in my life.
The doctor tried to console me by saying she understands it is hard to have a baby with a setback like this when you assumed your baby was perfectly healthy.
Nope, that's not it.
I was stretched so thin with everything that had transpired over the last two weeks that I had no room to choke down any more emotions. They were just spilling out, which is embarrassing for someone like me who prides herself on being a robot.
We had about an hour or so to head back to the motel and grab whatever we needed for a potential hospital stay, but since I was completely past my breaking point already, I didn't understand exactly what we were doing. I was somewhat aimless and Josh and my sister had to pack things for me.
Walking across the parking lot was excruciating. My incision felt like it was tearing open, my feet and legs were still hugely swollen for some reason, and I still hadn't had a chance to really sleep. When we checked into a room I was already a mess. Even though the nurse, who was also the lactation consultant, was being kind, I felt like my autonomy was being violated. She kept putting a cup of water in my face without asking, and when I said I was only used to pumping one side at a time, she insisted I would do both sides. She then proceeded to shove the two bottles into my hands. It can be really humiliating trying to pump in front of someone, especially when your milk has not come in yet. There was not much coming out at all and she made a comment about how it wouldn't be enough to get him back up to his birth weight. She started throwing out numbers about how much he would have to eat and how often. I mentioned his lip tie and she assured me that it wouldn't stop him from latching, just from nursing efficiently once he was already latched on. After she spent some time assessing the situation, she sat down to offer us her proposed plan.
It began with stopping breastfeeding, pumping instead, and offering formula to make up the difference in what he should be getting for a feeding.
I immediately told her that I would not be giving up on putting him to the breast.
Why would you stop attempting to get your baby to breastfeed after only a few days? My milk would come in, and he had started to improve little by little. I planned to continue trying to nurse him first, then pumping and feeding, then supplementing with formula.
She was a little irritated with me, and Josh thankfully stepped in because I was on the verge of being unable to communicate with her any further ( I think after all these years, he has begun to recognize that any form of advocating for myself causes me extreme anxiety - and when my voice gets shaky, I look away and become quiet, I have reached my limit). He very directly told her that we were not comfortable giving up nursing, and he said that we can pump and supplement to get his weight back up. Then he asked if we were going to be seeing the doctor and for some reason, she was good and pissed off by this point. She stood up and told us the doctor was on his way, then scolded us for not wearing our masks while other people were in the room. We had just spent several days in the same OB unit and had never once been asked to put our masks on when someone came in to care for us.
Nurses came in to check his bilirubin levels. We were told that they would admit him at a level of 18 or above, and the first thing they would do was a skin test. It would give them an idea of whether the blood test was necessary.
Not surprisingly, the skin test came back as 16 which is a little too close to the cut off - so they came in, cut his little heel and collected blood. We would be told the result in about an hour.
When she walked out, Josh and I discussed our options. That morning, Atlas had tried a little harder to latch on even though he didn't breastfeed for very long. He had also decided that the bottle was okay and for the first time, his tummy had gotten full and he was content. We had bought formula the night before and were planning to use it. We were very confident that if it were just a weight issue, we could get his weight back up without the help of the hospital. The prospect of leaving on the ferry the next day was still in our minds and we were more prepared for the task of needing to supplement him with a bottle to get him to gain weight.
When the doctor came in, we told him that we would be going back to Hoonah if the baby's bilirubin test came back okay. The doctor did not seem fond of the idea and wanted to "prove the baby was gaining" before we left the hospital. We basically told him that we were only staying if the bilirubin was high, and that if it wasn't, we were going to return to our motel room to feed our baby and we would come back that night for a weight check.
For the record, doctors don't usually like it when you make decisions against their recommendations. Even the nicest, most well-meaning doctors become off-put when patients choose not to blindly follow. I can understand to a degree; I have seen so many people that are uneducated and don't have the knowledge to make an informed decision about anything. However, that's not me, and I am perfectly capable of taking all the information at hand and making good choices.
The doctor acknowledged that it was a hospital, not a prison, and they couldn't make us stay (well no shit). Josh of course assured him that we were not trying to be irresponsible parents by any means, and if there were any other issues we would obviously be staying for the safety of our baby. Everything hinged on the bilirubin level.
The doctor returned and crushed us with the news that Atlas' bilirubin level was 22. For about the third time that day I broke down and started crying; not because I was afraid or worried, but because there was no time in between all the bullshit to stop and regroup. We would be staying in the hospital for a couple days for phototherapy, and the Thursday ferry was off the table. We wouldn't be able to take another until the following Monday.
Since I hadn't really understood that we would be potentially checking back in to the hospital for a while, I hadn't brought the things I needed. I was only a few days out from a major abdominal surgery yet I hadn't thought about needing any of my pain medication, pads, breast pads, clothes, or anything. Josh had to walk back over to the motel room and gather things while I sat with the baby, crying in the OB room. Of course, rude lactation consultant was our nurse so she came in while I was trying to choke back tears. I hate crying, and crying in front of people is a whole extra level of shame and embarrassment. Yes, I am aware that it is a very unhealthy mentality to have, but we some of us have lingering trauma from childhood and I am working on it. She told me she was sorry that we had to come back and she knew how badly we wanted to go home. I don't know why, but I started sobbing like an idiot and pretty much word vomited that it had just been a really difficult pregnancy and then a difficult delivery and then he was a difficult baby and I was just a wreck at this point.
Thankfully, her mood towards us changed a lot once she was subject to my hysterical emotional upheaval. I apologized and she insisted on getting me water and some mother's milk tea. Maybe crying in front of people is the tool I should be using to convince them I am a human. Who knows.
The new plan was to send Holly, my sister, and her daughter and Dash home on the ferry in the morning and we would obviously be coming home Monday. I felt horrible sending Holly to her doom to take care of a house that probably hadn't been cared for much since Josh left, with 8 crazy children, many of whom she had not been around before. She had been a great support person while they were here and I was so glad they were able to stay until we got re-admitted; that was its own devastation, knowing my sister, her daughter, and Dash were leaving.
Josh kept track of the feeding chart, told me when it was a good time to pump, prepped bottles and fed the baby, and just generally ran errands and kept me off my feet. He tried to stay up as much as possible, and we took turns with around-the-clock feeding. Atlas was still peeing uric acid crystals, which are not uncommon once or twice in the first couple days. His however were a sign of continued dehydration and it was disheartening to see them over and over again.
Once we were certain we were missing the ferry and we were here to treat our baby for a few days, I managed to get into a better headspace and working together, three hours of sleep at a time, we powered through the first day. Early in the morning he was down to 6 pounds, 11 ounces. By midnight, he was up to 6 pounds 15 ounces. When they pre-emptively checked his bilirubin on Thursday morning, it had gone down to 18.8. It wasn't enough to leave, but we knew the lights were working. He finally had begun to pee and poop more frequently, and each feeding, he seemed to be a little more fond of the idea of breastfeeding. I could tell he wasn't getting a ton, but I had hope it would pick up more and more. That night we realized we no longer needed formula at all, and he had only gotten maybe two or three ounces of it.
It wasn't long before my sister messaged me to let me know my dad, who hadn't spoken to Holly in a few years, was already causing problems. He started complaining about me and Josh right away, and our house, and homosexuals. It was a huge argument, and then he started to harass Holly and my children, saying I am the worst mother he has ever seen and he is planning on getting our children taken away because I am "trying to make them all be gay," or some thing like that. After he insisted the kids come to eat at his apartment, he continued to lay into them about homosexuals and whichever choice minorities he felt like insulting before they just walked out. Josh called him to find out why we were receiving word about him causing drama and saying horribly inappropriate things in front of our kids, while he proceeded to insult Josh's career, make a claim that I am "taking pills" and that we have essentially lost our minds because we used to be christian but now I am "forcing" everyone to be Jewish. It was, all in all, a lot of fun to deal with while I was in a hospital trying to get my newborn healthy. I would like to applaud the sensitivity there, and acknowledge how selfless it was of my father to choose this time to put everyone's anxiety through the roof.
He never once asked about me or his grandson, even after Atlas was readmitted to the hospital. He only text Josh to bitch about my dogs, and bitch about my kids.
I chose to try to turn a corner and be positive from this point onwards. As much as my dad's insults and mudslinging hurt me and make me absolutely question my value in every way, I had to choose to let it go and focus on the important things we were facing. I did, however, still feel terrible that my sister was back there trying to take care of 8 kids and my entire household by herself while simultaneously dealing with our toxic father.
It was exhausting but we were working very hard to make sure our little man would fatten up and purge out all the bilirubin. Unfortunately, Josh was hitting a wall and I started getting up and doing more and more to try to make sure he was getting some rest. The more I was on my feet, the more swelling I had. My incision actually felt like it was possibly ripping open on the outside, but I couldn't exactly look at it very easily. That night we took turns walking across the parking lot to the motel to take showers. It was a very short walk with some stairs involved, but it was enough to cause my pain to flair up again. When I got there, I realized the bathroom mirror was a good height to examine my incision. Sure enough, there was a small area that had separated and the steri-strips had blood on them. As if it wasn't enough and my body was determined to make me as miserable as possible, I had a reaction to the steri-strips and had a thick, blistered rash covering the entire length of my incision. The hives on my torso and butt were still there as well, because apparently I am also allergic to pads, mesh panties, and elastic belly bands.
I had the nurses check my incision and they said if I can take it easy for a while I was probably fine, and I needed to just watch it closely. It's easier said than done, of course. It's hard to acknowledge your own needs for rest and healing when you are just trying to focus all your energy on getting your baby back out of the hospital. The entire concept of me recovering from surgery still had completely left my mind.
We endured a series of blood draws and weighing and questions about the feeding log as we watched his bilirubin fall from 14 with the lights to 13 when he had been off of them. His weight climbed steadily as well, getting back up to 7-3 by the time we were ready to get out. He occasionally read a little too cold on the thermometers, but I was told it's not uncommon for early babies.
For the second time in a week, we packed up our hospital room and got ready to leave. Right before we walked out the door this time, Atlas was prepared to make sure I would have an anxiety attack by bedtime. As I undressed him I noticed his feet were purple. I don't mean the typical newborn, purplish, feet-are-cold shade of purple. They were eggplant purple. His hands started to turn purple as well. Josh called in a nurse just to get some input before we left, and she went back and forth about getting his oxygen checked.
"Well, it's probably nothing, but better safe than sorry."
She went and got the pulse-ox and strapped it to his hand. His oxygen was hovering around 93, which she didn't especially like. When she moved it to his foot, it read a bit higher. I was assured that early babies do weird stuff, and all their bodily functions seem to take longer to regulate.
Back in the motel we juggled more pumping, this time with an obnoxious manual pump, and feeding and changing. I was exhausted because I STILL had not gotten more than three hours of sleep each night since before my Csection. Late that night I was really struggling with all the emotions hitting me all at once - I had been out of pain medication until we went to the pharmacy and couldn't sleep on my side. I was actually in pain most of the day because I was still doing too much. The hospital let us borrow a scale and I was terrified to weigh him and see the numbers going down. While trying unsuccessfully to find something I could sleep in that wouldn't irritate my incision or the rash around it, I broke down yet again. After crying for about an hour and admitting to Josh that I was not capable of taking care of my baby or keeping track of bottles and feedings, and I was obviously a shit mom for not realizing how much weight he had lost or how dehydrated he had gotten, he gave me my medication and insisted he would stay up with the baby. I needed sleep.
Just for good measure, Atlas' entire body turned bright red like a tomato for about fifteen minutes and scared the shit out of me until we googled it and found out it was normal for early babies.
I am honestly so done with early babies.
Josh made me sit on the bed almost all day on Saturday and waited on me so that I could keep my feet up and hopefully stop the one spot on my incision from getting worse. He stayed up with the baby again, and that brings us to today. We had our final check up this morning. The last bilirubin check was just the skin, and it registered 10. Atlas weighed 7-5. He is still gaining well, and he is latching on okay at every feeding. He is not getting quite enough yet, but I am pumping and Josh is staying on top of bottles, feedings, my meds, our meals, and pretty much everything. He and my sister deserve awards.
My incision is feeling much better after resting exclusively for two days, and we are so ready to head home. We (well, Josh probably) will be packing up the motel room soon and getting ready for a super early ferry trip in the morning. As bittersweet as it is knowing this is my last baby, I am glad all of this is behind us and we are moving forward. We are all ready for the next season of our lives.