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Erin
Mom to Eagan Nathaniel
April 30th, 2010-May 3rd 2010
Lost to VACTERL-H
Killeen, TX
My first child was born April 30th, 2010 and died May 3rd, 2010. But before I tell his story I should first tell a little of my story.
My name is Erin, and I am 23 years old. I had my 23rd birthday just about a month after my son passed away, so I was 22 when I found out I was pregnant and throughout the experience.
I enlisted in the US Army February 12th, 2008 at 20 years old, after encouragement from a friend-turned-lover I had known for almost 2 years. He was intent on enlisting since his father was a retired Special Forces medic and he decided that was a life that was interesting to him as well. I had just come out of a very short-lived but emotionally difficult relationship, and my relationship with him was really more of a convenience during my altered mind state. I decided to enlist as well because at the time I had basically nothing else going on in my life and really wasn't sure where I was going. I thought, hey, what have I got to lose. I get to get into shape, see the world, and get a paycheck and free healthcare while I'm doing it. Little did I know that was the first step to so much heartache.
The other mistake I made was deciding to marry this friend-turned-lover the day before he left for his basic training. We decided this was what we wanted to do because we were convinced we were in love, and we should get married so that we could be stationed together once we got out of training. I missed him desperately during basic training, but then in AIT my mind and heart began to stray. At the time it was very hard for me, but I realize now it was because we were never really meant to be married, and we had only dated for about 3 months before being separated for several months. It just wasn't a strong enough relationship to endure.
Fast forward, I got to my first duty station at Ft. Hood, TX in late June. We were together there for about a month before he had to deploy. The plan was that I was to deploy about a month later, and we would be on the said FOB and be able to be together throughout the deployment. That all was upset once I went the SRP process to prepare for deployment, and I was red flagged due to a possible breathing problem because I had had lots of trouble breathing when I ran in AIT. I spent 6 months on the rear detachment before it was decided that I didn't have anything wrong with me, I was just out of shape. This, of course, was frustrating because when they decided this I hadn't been running for 6 months. So in February 2009 I deployed to Afghanistan for a duration of about 5 months. During the time I was still stateside I had completely strayed and we decided that we were going to get divorced.
Fast forward again, it was after deployment and the estranged husband and I were on decent terms for the time being. We still hadn't started the divorce process because of the deployment, so I was constantly on guard because of the Army's policies on infidelity, even if the situation is taken care of internally.
During this time I had very few relationships and far too many flings. I was destroying myself internally with the guilt of my failed marriage, and had basically no self worth. I was drinking a lot with my “friends,” several of which I was sleeping with on the side. To some extent it was fun to just be living in the moment, but on the other side I was very depressed because no matter how much I wanted to stop, I continued to give into my impulsive nature. Soon I was no longer drinking for fun all the time, often it was just to try and forget how much I hated what I had become. I had also pretty much decided there was something wrong with me fertility-wise, because I wasn't really as careful as I should've been with so many partners, and had never turned up pregnant like I was afraid of.
I was so convinced I couldn't get pregnant, that I didn't notice when my period was a week late. I hadn't really been tracking it well, although it turned out that I had actually noted my last period on the calendar, and I hadn't done that in months. Strange how things happen that way. Eventually I started to notice that I was more bloated than usual, and thought that I was just putting on a few pounds. I kept joking with my friends that I thought I was pregnant because of my poochy belly, and then laughed about it while we were out drinking, and I was smoking a lot as well.
A short time later I realized I hadn't had a period in a while, and since I had noted my last period and counted it out and I was about 9 days late. I called my mom to ask if she thought I should worry about that, and she said I should definitely get a pregnancy test and take it in the morning, when the hormones are the most concentrated. I went to the store and bought a 3 pack of EPT pregnancy tests, and when I got home I was too impatient to wait for the morning. I decided to take one then, just to see what would happen, and to my dismay I got a faint positive. I took another in the morning, and of course, again, faint positive. I went to the doctor the next morning and asked for a blood pregnancy test since I knew they were more accurate, and of course it came back positive as well. I was referred to the women's clinic at the hospital, and they informed me that they wouldn't start a file for me on a blood test, that I would need to come back and take a urine test before they would give me a profile (basically a doctor's note limiting the exercise you're allowed to do) and set up my first appointment. Again, that was positive, and my first appointment was made for almost a month later, unfortunately.
During this time both the men that could possibly be the father had moved away on different orders, one to Kentucky, and one to Germany. And also I had been on a date with an amazing guy that I met through my ex-husband, of all ways. He was his tattoo artist. I had brought a friend of mine to him for a tattoo, and during the time we were hanging out at the shop all that day we started to take interest in each other, and when we went to leave he gave me his number under the “Well, if you're ever bored, you should text me,” pretense. I hung out with some of my friends on Saturday, and then on Sunday decided to text him because I had heard him say that he had a short day on Sunday and was off on Monday. I was also off on Monday because we had a four day weekend, so he came and picked me up from the barracks and we went to see “Zombieland” the weekend it came out. We clicked really well, and once the movie was over we decided to go back to his apartment. We watched another movie there, and of course since I had been so used to the lifestyle I'd been living, I tried to move faster than he was comfortable with. He wanted me, but he didn't want it to go so fast and I wasn't used to that. Of course I started to think something was wrong with me, but I realized later it was because he was actually a good man. He eventually gave in, only after running to the store for condoms, and I spent the night, although we didn't actually go to sleep until about 7 am. We watched the sun come up sitting on the balcony and smoking our last cigarette. I think I decided I loved him that first night, but it was a while before I could say I was “in love” with him. I still had terrible trust issues from all the times I had been the “other girl” and various other situations along the way.
The test I took in the morning was at his apartment a day later. Since I didn't just want to be like, “Hey guess what, I'm a month and a half pregnant already…” I decided to ask him about it the night before I took it. It was really strange because what prompted me to ask him about it was that he jokingly said “You should let me get you pregnant!” so I was forced to bring up the possibility that I might already be pregnant from someone else. It kind of came out like, “So what would you do if I was already pregnant…?”
He was a little taken aback, but we had become so close in such a short period of time he decided that he would be ok with it. He is 8 years older than me (30 at the time) and hadn't ever been in a real relationship like this before. He had actually been so cautious about it that he hadn't lost his virginity until he was 28, and at that point it was basically like he had decided it wasn't ever going to happen unless he just did it, so it wasn't with anyone he was in a relationship with. I hated that fact, because it made me feel so dirty, like I wasn't at all the kind of girl he should be with. I felt like I would never actually be good enough, but he always accepted me for who I am now. He says that he doesn't care about my past, only my present and future.
Fast forward again…my pregnancy was relatively uneventful in the beginning. I never really threw up much, but I was nauseous and tired all the time, which is worse because at least if you throw up you feel better for a while when you're done. I hated getting up for morning formation (at around 5 am, had to be there at 6), and almost got in a lot of trouble for a while because I was late more than I should. But I was the only pregnant female in my unit, and it was mostly guys so they weren't particularly sympathetic.
I had my first ultrasound around 20 weeks (19 weeks and 5 days I think). I came expecting to see my healthy baby, and hopefully find out the gender. James and I were kind of hoping for a girl, but we would be happy either way, as long as the baby was healthy. He was able to go with me, so we were both really excited. The ultrasound tech was a sweet older lady with a wonderful demeanor. She kept talking to my baby, referring to him as “little person” and gave us no indication of anything looking wrong. She printed a few pictures for us, and then went to get the doctor. This was my first child, so I had no idea how these things normally went. When the doctor came in he introduced himself, and then started with, “This baby has a lot of problems.” My heart sank, and I went into a mild state of denial as he told me that he had a lot of fluid on his brain and a large omphalocele. He explained what that meant, that several of his major abdominal organs were outside of his body inside a membrane, and asked us what we wanted to do; did we want to continue the pregnancy? I thought, of course I want to continue, but I want to go back to a few minutes ago before my world was shattered. He said it was most likely a chromosome issue, like Trisomy 13 or 18, so we could do an amniocentesis to find out. I was trying so hard to hold back the tears, I really just wanted him to stop talking and let me go home. I couldn't believe that this was happening to me. I couldn't do anything but cry and lay in bed in James' arms. At the time all I could think was that maybe we should just let this one go and try again? Maybe it just wasn't meant to be… But after talking to my mom and to James about it, we decided to get the amnio, and make the decision then. If he did have Trisomy 13 or 18 then yes, we would have to terminate the pregnancy because it would be cruel to continue. But if the chromosomes were normal, then no one really knew what could possibly happen, so it was a chance we had to take. We called the office and scheduled the amnio for the next afternoon.
Either this doctor was an idiot or it was just a fluke, but the amnio, which is normally a minute or two at most, took about 45 minutes to complete. A bit of tissue got stuck on the end of the needle, so he couldn't draw the fluid. And my baby kept crowding around the needle and slapping it and just generally didn't like it being there. After what seemed like an eternity of terribly uncomfortable uterine cramps as he moved the needle back and forth, he was finally able to draw enough to use. By that time I was almost in tears from the pain, but I knew I had to endure it to find out what was wrong with my baby. It wasn't a choice in my mind, so I just kept squeezing James' hand when it got to be too much.
It took several days longer than they told me to get the results back, but to my relief I was told he had normal chromosomes, and was for sure a male. Little did I know this would open up a whole different road of uncertainty and lack of answers.
We decided after that to go ahead and continue the pregnancy, since they said that if he had normal chromosomes they didn't know exactly what was going to happen, and sometimes these things resolve themselves later on. It was a small chance, but it was a chance that we had to take, for his sake. At about 28 weeks I started going to a big Air Force hospital in San Antonio, which was about a 2 ½ hour drive for us, but it was much bigger and better equipped for cases like mine. I saw maternal fetal medicine, a neurologist, and a pediatric cardiologist on my first visit. It was never a good time, it seemed like every time they gave us more bad news, or asked if we still wanted to continue the pregnancy. We always left with bad news, but I couldn't allow myself not to let him grow as long as he could. There was always the possibility that these things could be fixed once he was born, and that was all I had to hang on to.
Eventually the doctors and I decided that he needed to be born early, because his head was growing so rapidly he needed to be taken out so they could begin treatment if it was possible. I was going every week, and he was measuring two weeks larger than the week before each time. At 35 weeks his head was measuring 41, so we just couldn't let him stay in and just keep getting worse. They said 35 weeks was long enough for his lungs to have a decent chance of being developed, and the negatives outweighed the positives of him staying in my womb. We agreed to a scheduled c-section, to avoid damaging the omphalocele and to avoid the possible scenario in which his head didn't fit through my pelvis and I would've had to have an emergency c-section anyway, which is much more traumatic to both mother and child.
I was excited the day he was to be born, because even with all of his problems I wanted to see him so bad. I had some fear in the days before because I felt like it had come too soon, that I wanted him to stay with me as long as he could. I loved feeling his kicks and swirls; he was a very active little boy. Even when he started lodging his feet under my ribcage every time I sat down, I loved knowing he was there and alive, it gave me hope when I had very little.
I was warned beforehand that no one knew what was going to happen when he came out, if he was even going to live after birth because his lungs may not be developed enough. So I was forced to decide what I wanted to do in the worst case scenario. I had to plan for his cremation, research funeral homes, pick out his urn and my cremation jewelry, all while he was still very much alive and inside my belly. I don't ever wish that on anyone. No parent should have to plan their child's disposition before they're ever born. But in some strange way it gave me a sense of peace to know that the decisions were made. That in that worst case scenario I wouldn't have to make any of them while I was in shock.
The day came, and I had packed our bag the night before. My mom came in from Illinois to be there with me, and I appreciated it as I needed all the support I could get. She had been there for me throughout the ups and downs of my pregnancy and I felt like she was one of very few people I would've been comfortable with being there. James' dad offered to come, and later his mom and sister, but he decided not to have them come. I checked in and was put into a room, given a gown to change into and had two IVs started, one in each arm. They wanted to have them already established for the surgery and for later just-in-case. I wasn't allowed to eat or drink anything after midnight, so when I didn't get into surgery until almost three I was pretty much miserable.
They finally wheeled me into the OR, and James got changed into scrubs so he could come be with me in surgery. They told him they would do all the prep and then come get him before they actually started. They put a spinal block in place and started the medicine that was supposed to cut off all feeling to my lower half. They tested my senses every few minutes, and I kept feeling pain, and could still wiggle my toes on one foot. This worried them, so they decided to do another spinal block to be for sure this time.
But, for some reason, in between deciding that and actually doing the second spinal block, they gave me a dose of nitrous gas. I've only had it once before, when I was very young, but I vividly remember the psychedelic experience I had while getting my teeth pulled. This time was no different; in fact it was much, much worse.
Before I knew what was going on the operating room started to fade away, and I was on a white plane of nonexistence, floating outside my body. I thought I could vaguely determine sounds from very far away, but I was convinced that everything that I could “remember” was all just a dream, that this plane was reality and I was “waking up” from this other world. I remember being very sad that I wouldn't be able to see my family again, or James, or of course my baby. And after what seemed like an eternity I started to be able to detect distinct voices again and started to come back to the real world. I had no comprehension of how much time had passed or what was going on, so I immediately started taking a mental inventory even in my still slightly altered state. Basically, (looking around) ok, I'm still in the OR, (felt my belly) my baby is still inside of me…and they're just now doing the second spinal block
I still haven't figured out why they knocked me out in that in between period. Coming back to reality was a very mentally changing experience. It was like beginning the hallucination, only in reverse. I had to come back to realizing that it was a hallucination and that all the things I had “decided” in the other realm weren't true, that I was back in the real world. I had just been thrown out of my body and now had to regroup as I came back into it. I was very nauseous from the gas and threw up into a pan that the nurse held for me while they were working on my back. It wasn't particularly uncomfortable though because they had given me that drink that neutralizes your stomach acid before I went into surgery.
Shortly after that they laid me back down and set all the operating equipment back up, draping the sheet across my mid torso so I wasn't able to see what they were doing. Apparently they had started before I was sure what was going on, because I heard later from James that he was upset because they told him they would come get him before they started. He came in and sat by my head while the surgery was in progress, and giggled with me at my still loopy babbling about what I could and couldn't feel, and about my recent out of body experience. It was the strangest feeling I've ever had, the slight pressure as the doctors cut and tugged at my skin and muscles and eventually my uterus, but experiencing no pain. They then told me I might feel some pressure, and that was a vast understatement. What I gathered from feeling alone, one doctor placed his hand on my upper abdomen, at the base of my ribcage, and pushed down much harder than I was expecting. At the same moment another doctor was pulling on my uterus, and it felt like they were trying to rip my whole belly off in one piece, but still no pain.
Moments later I heard the cry of my firstborn son. It was a small thing, short and sweet and then quiet. James and I could do nothing but stare at each other and grin, and a peace came over me like I've never felt. He was born at 4:07 pm, and we later found out that he weighed 5 lbs. 10 oz., and was 19.2 inches long. They weren't able to show him to me because they had to take him straight to the NICU, but they came and got James so he could come cut the umbilical cord. He came back to me minutes later, while they were still stitching me back up, and all he could say was “He's pretty,” and grin even more. They told us later that he breathed on his own at birth, they just decided to put him on the ventilator anyway to give him some help because the omphalocele was weighing down his chest a bit. One of the doctors poked his head around the curtain to tell me that he was doing fine, and that they had noticed some small nodules on one of his ears. I found it strange at the time, but later I found out the truth about them.
Once the surgery was done I was wheeled down a long hallway and into an elevator to be taken down to the recovery ward. They said I would probably be there about an hour, but I was released after only 30 or 40 minutes because I was very coherent and had no problems they could see. The nurses cleaned up the blood and put a thick pad in place for the beginning of my lochia. I was put on a pitocin drip to encourage my uterus to contract and return to its normal size. They also massaged my fundus quite a bit to get it to firm back up, and I just had to grit my teeth and endure as it was very painful on my fresh incision. They decided I was doing very well and sent me back up to my room where James and my mom were waiting anxiously. Mom told me later that when he came back to the room after surgery that he was tearing up through his smile and hugged her tightly, but by the time I got up there he had calmed down again. Initially they weren't in the room when I got there, since they had been told it would be longer than it was they had gone down to eat and have a cigarette. So they were a little upset when they got back, but it was quickly glazed over by excitement.
The anesthesiologist came by to check on my legs and warn me that I may have a bad headache the next day since I had to have a double dose of the medicine they put in the spinal block, but that I shouldn't be in too much pain for a few hours because of the morphine that was mixed in. It was very frustrating because that also meant it took my legs slightly longer than they should to regain feeling, and I wanted so badly to get up and walk around so I could begin recovery and go see my son in the NICU. The nurses came in and out throughout that time, checking my incision and giving me pain medication through the IVs that were still hooked up in my arms. I had to finish the pitocin drip, and I was given some fluids as well, but I still had a catheter in place so I never felt that I needed to use the bathroom. We spent the next few hours talking about Eagan because they had gone to see him already and were telling me about how beautiful he was and his thick head of black hair. James encouraged me that he didn't look very weird at all. We were worried about how he was going to come out knowing that he had the omphalocele and the enlarged head circumference, but he said that it wasn't as big as we had thought it would be, and that his head didn't really look odd unless you were really looking for it. We also talked to some of the doctors and nurses, and the NICU social worker some more during this time. I was still very much in shock, so when they were telling me about all the other problems they had found that couldn't be seen on the ultrasound, and the possible diagnoses, all I could really do was nod and say “Yeah,” a lot since I wasn't really registering all of it at the time.
Once my legs came back to life, the nurse helped me to the bathroom and showed me how to use the squirt bottle to clean myself up while I was bleeding heavily. I had wanted so bad to get up and move around, but once that was made a reality it was suddenly much less appealing. The pain medication helped, but it really just took the edge off and I was still in a lot of pain trying to move around. I was given a second gown to put on like a robe since I hadn't brought my own, and we all went out to walk around the hall, me clinging to the railing and James most of the way. I soon got tired, and we went back to the room. They called down to the NICU to find out if it was ok for us to come down and see him, and we were given the ok so the nurse brought me a wheelchair so I didn't have to try and walk there and back on my own. The NICU was very dim and quiet since it wasn't until about 11 pm that I was able to go and see him. It wasn't very large, so it was somewhat close quarters at a few points as we made our way across the room with me in the wheelchair.
I became very nervous as we approached his bedside. I once heard it described as like meeting someone for the first time that you've only spoken to on the phone, and it was something like that except obviously I was much closer to him than just speaking. It was still very hard for me to make the connection in my head for a while though, that this gorgeous sleeping child was the same little boy that had been dancing around inside of me for the last 8 or 9 months. He had always had so much energy in my womb, but they had to sedate him because of the breathing tube and wires, and the omphalocele, so he didn't hurt himself accidentally. He had lots of beautiful thick black hair, and it looked as though it might've been curly had it ever grown out more. My mom had remarked how much he looked like me as a newborn, as I also had the thick black hair and eventually lighted up. His skin was perfect and smooth, so beautifully soft and delicate. It was a sort of reddish tanned color, as I was later informed sometimes happens in premature babies because their skin in thinner and the blood is closer to the surface. I was so scared to touch him, he was hooked up to so many monitors and tubes and wires, I was terrified I would accidentally mess something up. And they were insistent about washing our hands thoroughly before touching him so that he didn't catch anything, so James and I were very paranoid and doing it too much. They also didn't want him to be stimulated too much so they didn't have to sedate him any more than they already were. He was never conscious when I visited him, but I believe he knew we were there, and that he recognized me. I was fascinated with his gorgeous tiny feet and long little monkey toes, and when I touched them he always curled then back toward my fingers as if to let me know that he knew I was there.
I didn't notice it at first, but one of the times I visited him they had his head laid on the opposite side and I was able to see the “nodules” they had been talking about. In reality he was missing almost the entire ear. The ear canal was closed off completely, and his ear was merely a small bit of a lobe with the nodules that the doctors had mentioned. It was one of the stranger things that was wrong with him, to me anyway, that his right ear was perfect but the left was almost missing. And the doctors never actually addressed it with me, but compared to the rest of his problems that was really superficial.
The next few days are almost a blur now. If I think about it I can remember most of it, but it's not something I really think a lot about. The next few days consisted of me trying to walk as much as I could manage and nurses coming in and out to monitor my vital signs and administer pain meds at all hours. I was also taught how to use the automatic breast pumping machine they had, but I could never get anything more than a few drops of colostrum, nothing I could collect. After a day or so of pumping every few hours and getting nothing I decided it wasn't worth losing sleep over since my baby couldn't even eat anything until after the TE fistula was fixed. They said I should pump because they wouldn't want to feed him formula after that was fixed, but I think in the back of my mind I knew all along that he wouldn't make it that far. I believe I really knew it the whole time, it was just that the shock had put me in such a state of denial I kept thinking maybe, somehow, he could miraculously be ok. Even when the doctors were trying to explain the seriousness of his brain damage, and how even though he could probably survive all the physical surgeries he would still never be mentally capable of much and would require 24 hour care…I just kept nodding and saying “Ok,” and continuing to be unsure.
Also during this time we were informed of all the other problems he had that couldn't be found on any of the ultrasounds. They had done x-rays and an MRI since he had been born and were able to see more clearly the things they couldn't see on the fetal MRI that they had done at 28 weeks. Despite what the pediatric cardiologist had said from the ultrasounds he had a ventricular septal defect. But she had said that it's very difficult to see the heart on an ultrasound once the ribs have hardened because they cast shadows across the inner torso. The worst news, though, was that he also had a tracheoesphageal fistula. In short, his esophagus stopped short just below his neck, and his stomach was connected to his lungs. So was getting air into his stomach and stomach acid into his lungs. This became a problem on the second and third day when he began to rely more and more on the ventilator, but there was a leak around the tube so they were having trouble keeping his oxygen levels up. But they didn't want to change it to a bigger tube because if he got too much air in his stomach it could rupture, and it was inside the omphalocele.
I maintained this fog until the day of his first scheduled surgery, to repair the TE fistula so he could be fed by mouth and wasn't damaging his lungs anymore. They finally had us meet with them and come up with a decision. I wanted to keep running from it, I felt like it was too soon for me to decide whether he lives or dies on the spot. They gave us a few hours to talk about it, and as soon as we got outside it just washed over me. We could not keep this baby. It would be too cruel and selfish to force him to endure all the surgery it would take to “fix” him, for years since the omphalocele couldn't be fixed until he was 2 or 3 years old. And with all the brain damage he was probably blind, and would likely have had severe cerebral palsy. He would've had no quality of life, and neither would we if we had to watch him constantly. He would never go to school, or be able to go to day care even…it was just too much. We went back upstairs and found the doctors to let them know our decision.
They all agreed that it was the best thing for him, and for us. They gave us some time to go eat something while they prepared him for us. My mom had gone to Target to get a few onesies for us to put him in, since I hadn't brought anything at all with me. We hadn't really bought much of anything for him since we knew there was so little chance that he would survive. We decided on a pale green striped one with little monkeys all over it, since we had been talking so much about his adorable monkey toes. We had brought a blanket that my grandmother had made for him, it was crocheted and a soft yellow.
Once we made our way back up to the NICU, they had a room prepared for us in the back of the NICU, with dim lighting and chairs, so we could spend time with him isolated from the other babies and any parents that might come in to visit their hopefully more fortunate children. They had told us before that they would be using the bag to keep him breathing until we decided to have it removed, but instead they brought the ventilator machine in the room with us so they wouldn't have to be hovering over him the whole time.
This was the first time, and all too soon the last time, I ever held my beautiful son. They brought him to us on a small, thin blanket with cute jungle scene on it, because of the monkeys on the onesie. They carefully laid him across my waiting arms, already draped in the blanket we had brought, and he was heavier than I had expected, but I knew he was a big baby for how early he was. He smelled faintly of citrus, but I wasn't sure why. I had never been good with babies, and had always been scared to hold them, but I'm sure most new parents go through the same phase, except they actually get the chance to perfect the art. We had to keep his head just right while the ventilator was still in, and he also still had an IV to keep him sedated and pain-free. Again, he was the most amazing and beautiful thing I had ever seen. He was so perfect, even with all his deformities, he was perfect in his own right. His skin was the softest and sweetest…I am at a loss for words as I type this. I knew then what it was like to be a mother. All the times my own mother had told me that she loved me; I now knew exactly what that really meant. I had never loved anyone or anything so much before, I had never experienced that depth of emotion ever before. This gorgeous creature had been created inside my own body, and I never wanted that moment to end. He still responded to my touch on his feet by curling his toes and lifting his feet toward me, and I was so happy when he wrapped his little fingers around mine. He never once opened his eyes, so I was never able to see what they looked like, but now I think that was probably for the best. The nurses said when they did the response testing on him with the flashlight his eyes didn't point the same way since he was probably blind. He did react to changes in light though; he flinched when the NILMDTS photographer used the flash. She took lots of pictures of us holding him while the ventilator was still in, but I only let her take a few after it was removed. At the time I made that decision because I didn't want any pictures to exist of him after he had passed, and there was no way to know how long that might take. I regret that decision dreadfully now; he lived for several hours afterward and we could've had so many more of him without the tubes covering his face. We did take a few with our own cameras, and those are my favorite pictures of him by far.
I wasn't keeping very good track of time, so I'm not sure how long we held him with the tube still in. I passed him on to James, and to my mom, and we all spent time with him while he was still somewhat responsive. I was terrified to have them remove the tube, because we didn't know how long we would have with him after, but eventually I knew I couldn't delay it any more. We called in the doctors, and together a few of them took the tape off of his face and then slowly removed the tube from his throat. I immediately regretted that choice, as he became essentially lifeless the second the tube came out. Where he had been at least responding to my touch before, his little body went limp and his only movements were the tiny little “guppy breaths” the doctors said he might be continuing for some time. He couldn't be declared dead until there was no detectable heartbeat, so we held him for the approximately 5 or so hours it took for his heart to stop. This was the longest night of my life.
We traded off a few times throughout so that my mom and James could spend time with him while he was still breathing too. It hurt me so much, and made me so happy at the same time, to watch how wonderful a father James was to him, how delicately he held him, insuring his head never sagged too far or he was never uncomfortable. My mom was visibly breaking as she spoke softly to her first grandchild in his last hours. I still cried a bit, but I had the peace of shock to rely on throughout the process. I had to leave to take a bathroom break halfway though, and I remember laughing to myself about the indentions in my forearm from the crocheted pattern in the blanket under his weight. He would take a few breaths in a row, and then there would be a gap, so it was unpredictable and actually made me jump a few times which James found amusing. I suppose it was our way of coping with the horrible situation, laughing at the little silly things along the way. His skin became increasingly cool to the touch and started to lose its color as the night wore on, but I couldn't think about anything but how gorgeous and soft he was, until it came down to the last hour or so…
A few times toward the end we had the doctors come and check his heartbeat to see how much it had slowed, and possibly make a guess at how much longer we had him with us. Much closer to the end, they had an emergency c-section come in so they warned us that they might be out of the room for a while. He hadn't taken a breath in several minutes, and at the same moment James and I just knew that he was gone. He “felt” different after that, like we could feel that he was no longer with us. I tried to get him to go get the doctor, but they were all busy working on this new baby. I was frustrated to tears, I just wanted someone to come tell me my baby was dead and give the time of death accurately. I decided, thinking about it later, that I thought it was beautiful that another baby came into this world in the same moments that mine was leaving. I often wonder if that baby survived.
Finally the doctor came back and said that his heart had stopped. His time of death was decided as 10:06 pm, on May 3rd, 2010. They unhooked his IV tubes and I was allowed to hold him as long as I needed. I just cried and carried him around the room, hugging him to me but being careful not to bend or twist anything unnaturally. I kept my lips rested against his forehead, and even though it was now cold his skin was still amazingly soft.
I carried him around the corner back to his bed, and they started to help me lay him down to be bathed. I couldn't get myself to put him down, so they left me alone a while longer. A few minutes later they helped me pull the blankets from under him and lay him back into the bed he had once lived in, what seemed like days ago. His lips were beginning to blue, and his skin now had a pale yellowish cast. One of his eyes had started to droop, but didn't come open. He was still so incredibly beautiful, I can't even come up with any better words to describe him. I had originally been opposed to helping with his bath, but after holding him through this ordeal I decided that I was his mother, I should be the one to do things like that. But once we started and I began removing the tegaderm bandage that was keeping his IV line in place (using an oily pad meant for that purpose, which smelled like citrus which was what I was smelling earlier), I was so scared I was going to tear his skin or something. While we were taking off the tape and stuff the social worker and a nurse had begun making plaster molds of his feet and hands. They tried to get me to help, but I just couldn't stand trying to force his lifeless fingers to straighten out to be placed in the mold. I realized there was no way I could keep doing this, I was getting so annoyed with the nurses giggling with each other about how difficult it was to get proper molds of his hands because the fingers kept curling…I wanted to scream, do you realize this is my child?! I spoke up about not being able to handle it and they left me alone with him again, except for the doctor who sat at the table nearby filling out paperwork. All I could do was cry, and lay my body across him so that my arms encircled his tiny frame. I tried to leave several times, but could never get more than a few feet away. I just couldn't bear the thought of leaving my son on that table with these people who didn't really know us or him or anything, although in reality they spent more time with him than I did while he was living. I just wanted to die right there with him on that table, I couldn't imagine living without him. James finally convinced me to go so we could fill out some more paperwork and talk to the genetic counselor that was waiting for us.
In the next few days I was like the living dead, or so it felt. I woke up crying, I never felt like eating, or showering, or getting dressed, but unfortunately I was still in San Antonio, and we still had to make cremation arrangements with a nearby funeral home, and get the paperwork turned in for his birth certificate, and later his death certificate. I was on auto pilot, finding a bit of solace here and there…shock and percocet is a wonderful combination.
I spent every morning crying for at least an entire week or two, then I still cried every day at some point for a few more weeks… It never goes away, it just gets more manageable.
My first Mother's Day was about 6 days after he died. We decided not to do anything big, but I dressed up and put makeup on for the first time since before he was born, and we went to a family owned Italian restaurant I picked. When we got there they were handing out long-stem red roses to women that were obviously mothers. They didn't ask me, until later, and when they did they didn't ask if I had children, they asked if I celebrated Mother's Day. I shyly said yes, so they gave me one too. I dried that rose and now it lies across our mantle in front of Eagan's urn.
I don't know what's going to happen next as of yet. I've gone back to work, and I'm trying to get out of the Army on a hardship discharge or something similar. I just can't keep up with this life anymore and I don't feel like I'll ever be able to be a functional soldier again. Hopefully that will be resolved within a few months and I'll be able to move on in my new life as a mother without her child…
James and I plan on TTC again eventually, but right now I'm terrified to be pregnant again. I desperately wanted another child in the weeks immediately following Eagan's death, but now that it's been a couple months I'm so scared. I want James and I to be able to be just us for a while first, to see how our relationship withstands my mood swings and depression through all of this.
Eagan Nathaniel, April 30th-May 3rd 2010
You were the most beautiful thing I've ever seen, I love you more than life itself and I'll never regret the time I was allowed to have you, or the decision to let you go...
“Loved with a love beyond telling, missed with a grief beyond all tears.”
My name is Erin, and I am 23 years old. I had my 23rd birthday just about a month after my son passed away, so I was 22 when I found out I was pregnant and throughout the experience.
I enlisted in the US Army February 12th, 2008 at 20 years old, after encouragement from a friend-turned-lover I had known for almost 2 years. He was intent on enlisting since his father was a retired Special Forces medic and he decided that was a life that was interesting to him as well. I had just come out of a very short-lived but emotionally difficult relationship, and my relationship with him was really more of a convenience during my altered mind state. I decided to enlist as well because at the time I had basically nothing else going on in my life and really wasn't sure where I was going. I thought, hey, what have I got to lose. I get to get into shape, see the world, and get a paycheck and free healthcare while I'm doing it. Little did I know that was the first step to so much heartache.
The other mistake I made was deciding to marry this friend-turned-lover the day before he left for his basic training. We decided this was what we wanted to do because we were convinced we were in love, and we should get married so that we could be stationed together once we got out of training. I missed him desperately during basic training, but then in AIT my mind and heart began to stray. At the time it was very hard for me, but I realize now it was because we were never really meant to be married, and we had only dated for about 3 months before being separated for several months. It just wasn't a strong enough relationship to endure.
Fast forward, I got to my first duty station at Ft. Hood, TX in late June. We were together there for about a month before he had to deploy. The plan was that I was to deploy about a month later, and we would be on the said FOB and be able to be together throughout the deployment. That all was upset once I went the SRP process to prepare for deployment, and I was red flagged due to a possible breathing problem because I had had lots of trouble breathing when I ran in AIT. I spent 6 months on the rear detachment before it was decided that I didn't have anything wrong with me, I was just out of shape. This, of course, was frustrating because when they decided this I hadn't been running for 6 months. So in February 2009 I deployed to Afghanistan for a duration of about 5 months. During the time I was still stateside I had completely strayed and we decided that we were going to get divorced.
Fast forward again, it was after deployment and the estranged husband and I were on decent terms for the time being. We still hadn't started the divorce process because of the deployment, so I was constantly on guard because of the Army's policies on infidelity, even if the situation is taken care of internally.
During this time I had very few relationships and far too many flings. I was destroying myself internally with the guilt of my failed marriage, and had basically no self worth. I was drinking a lot with my “friends,” several of which I was sleeping with on the side. To some extent it was fun to just be living in the moment, but on the other side I was very depressed because no matter how much I wanted to stop, I continued to give into my impulsive nature. Soon I was no longer drinking for fun all the time, often it was just to try and forget how much I hated what I had become. I had also pretty much decided there was something wrong with me fertility-wise, because I wasn't really as careful as I should've been with so many partners, and had never turned up pregnant like I was afraid of.
That is, until September 2009.
Of course the initial problem with this is, who is the father? Luckily (if you can call it luck) I had only been with two men that month, so at least it was less difficult than it could've been at another time. To this day I'm still not sure beyond a shadow of a doubt. I've told one of them that he was the father, but now that I know more about pregnancy and fertility I'm really not sure anymore.I was so convinced I couldn't get pregnant, that I didn't notice when my period was a week late. I hadn't really been tracking it well, although it turned out that I had actually noted my last period on the calendar, and I hadn't done that in months. Strange how things happen that way. Eventually I started to notice that I was more bloated than usual, and thought that I was just putting on a few pounds. I kept joking with my friends that I thought I was pregnant because of my poochy belly, and then laughed about it while we were out drinking, and I was smoking a lot as well.
A short time later I realized I hadn't had a period in a while, and since I had noted my last period and counted it out and I was about 9 days late. I called my mom to ask if she thought I should worry about that, and she said I should definitely get a pregnancy test and take it in the morning, when the hormones are the most concentrated. I went to the store and bought a 3 pack of EPT pregnancy tests, and when I got home I was too impatient to wait for the morning. I decided to take one then, just to see what would happen, and to my dismay I got a faint positive. I took another in the morning, and of course, again, faint positive. I went to the doctor the next morning and asked for a blood pregnancy test since I knew they were more accurate, and of course it came back positive as well. I was referred to the women's clinic at the hospital, and they informed me that they wouldn't start a file for me on a blood test, that I would need to come back and take a urine test before they would give me a profile (basically a doctor's note limiting the exercise you're allowed to do) and set up my first appointment. Again, that was positive, and my first appointment was made for almost a month later, unfortunately.
During this time both the men that could possibly be the father had moved away on different orders, one to Kentucky, and one to Germany. And also I had been on a date with an amazing guy that I met through my ex-husband, of all ways. He was his tattoo artist. I had brought a friend of mine to him for a tattoo, and during the time we were hanging out at the shop all that day we started to take interest in each other, and when we went to leave he gave me his number under the “Well, if you're ever bored, you should text me,” pretense. I hung out with some of my friends on Saturday, and then on Sunday decided to text him because I had heard him say that he had a short day on Sunday and was off on Monday. I was also off on Monday because we had a four day weekend, so he came and picked me up from the barracks and we went to see “Zombieland” the weekend it came out. We clicked really well, and once the movie was over we decided to go back to his apartment. We watched another movie there, and of course since I had been so used to the lifestyle I'd been living, I tried to move faster than he was comfortable with. He wanted me, but he didn't want it to go so fast and I wasn't used to that. Of course I started to think something was wrong with me, but I realized later it was because he was actually a good man. He eventually gave in, only after running to the store for condoms, and I spent the night, although we didn't actually go to sleep until about 7 am. We watched the sun come up sitting on the balcony and smoking our last cigarette. I think I decided I loved him that first night, but it was a while before I could say I was “in love” with him. I still had terrible trust issues from all the times I had been the “other girl” and various other situations along the way.
The test I took in the morning was at his apartment a day later. Since I didn't just want to be like, “Hey guess what, I'm a month and a half pregnant already…” I decided to ask him about it the night before I took it. It was really strange because what prompted me to ask him about it was that he jokingly said “You should let me get you pregnant!” so I was forced to bring up the possibility that I might already be pregnant from someone else. It kind of came out like, “So what would you do if I was already pregnant…?”
He was a little taken aback, but we had become so close in such a short period of time he decided that he would be ok with it. He is 8 years older than me (30 at the time) and hadn't ever been in a real relationship like this before. He had actually been so cautious about it that he hadn't lost his virginity until he was 28, and at that point it was basically like he had decided it wasn't ever going to happen unless he just did it, so it wasn't with anyone he was in a relationship with. I hated that fact, because it made me feel so dirty, like I wasn't at all the kind of girl he should be with. I felt like I would never actually be good enough, but he always accepted me for who I am now. He says that he doesn't care about my past, only my present and future.
Fast forward again…my pregnancy was relatively uneventful in the beginning. I never really threw up much, but I was nauseous and tired all the time, which is worse because at least if you throw up you feel better for a while when you're done. I hated getting up for morning formation (at around 5 am, had to be there at 6), and almost got in a lot of trouble for a while because I was late more than I should. But I was the only pregnant female in my unit, and it was mostly guys so they weren't particularly sympathetic.
I had my first ultrasound around 20 weeks (19 weeks and 5 days I think). I came expecting to see my healthy baby, and hopefully find out the gender. James and I were kind of hoping for a girl, but we would be happy either way, as long as the baby was healthy. He was able to go with me, so we were both really excited. The ultrasound tech was a sweet older lady with a wonderful demeanor. She kept talking to my baby, referring to him as “little person” and gave us no indication of anything looking wrong. She printed a few pictures for us, and then went to get the doctor. This was my first child, so I had no idea how these things normally went. When the doctor came in he introduced himself, and then started with, “This baby has a lot of problems.” My heart sank, and I went into a mild state of denial as he told me that he had a lot of fluid on his brain and a large omphalocele. He explained what that meant, that several of his major abdominal organs were outside of his body inside a membrane, and asked us what we wanted to do; did we want to continue the pregnancy? I thought, of course I want to continue, but I want to go back to a few minutes ago before my world was shattered. He said it was most likely a chromosome issue, like Trisomy 13 or 18, so we could do an amniocentesis to find out. I was trying so hard to hold back the tears, I really just wanted him to stop talking and let me go home. I couldn't believe that this was happening to me. I couldn't do anything but cry and lay in bed in James' arms. At the time all I could think was that maybe we should just let this one go and try again? Maybe it just wasn't meant to be… But after talking to my mom and to James about it, we decided to get the amnio, and make the decision then. If he did have Trisomy 13 or 18 then yes, we would have to terminate the pregnancy because it would be cruel to continue. But if the chromosomes were normal, then no one really knew what could possibly happen, so it was a chance we had to take. We called the office and scheduled the amnio for the next afternoon.
Either this doctor was an idiot or it was just a fluke, but the amnio, which is normally a minute or two at most, took about 45 minutes to complete. A bit of tissue got stuck on the end of the needle, so he couldn't draw the fluid. And my baby kept crowding around the needle and slapping it and just generally didn't like it being there. After what seemed like an eternity of terribly uncomfortable uterine cramps as he moved the needle back and forth, he was finally able to draw enough to use. By that time I was almost in tears from the pain, but I knew I had to endure it to find out what was wrong with my baby. It wasn't a choice in my mind, so I just kept squeezing James' hand when it got to be too much.
It took several days longer than they told me to get the results back, but to my relief I was told he had normal chromosomes, and was for sure a male. Little did I know this would open up a whole different road of uncertainty and lack of answers.
We decided after that to go ahead and continue the pregnancy, since they said that if he had normal chromosomes they didn't know exactly what was going to happen, and sometimes these things resolve themselves later on. It was a small chance, but it was a chance that we had to take, for his sake. At about 28 weeks I started going to a big Air Force hospital in San Antonio, which was about a 2 ½ hour drive for us, but it was much bigger and better equipped for cases like mine. I saw maternal fetal medicine, a neurologist, and a pediatric cardiologist on my first visit. It was never a good time, it seemed like every time they gave us more bad news, or asked if we still wanted to continue the pregnancy. We always left with bad news, but I couldn't allow myself not to let him grow as long as he could. There was always the possibility that these things could be fixed once he was born, and that was all I had to hang on to.
Eventually the doctors and I decided that he needed to be born early, because his head was growing so rapidly he needed to be taken out so they could begin treatment if it was possible. I was going every week, and he was measuring two weeks larger than the week before each time. At 35 weeks his head was measuring 41, so we just couldn't let him stay in and just keep getting worse. They said 35 weeks was long enough for his lungs to have a decent chance of being developed, and the negatives outweighed the positives of him staying in my womb. We agreed to a scheduled c-section, to avoid damaging the omphalocele and to avoid the possible scenario in which his head didn't fit through my pelvis and I would've had to have an emergency c-section anyway, which is much more traumatic to both mother and child.
I was excited the day he was to be born, because even with all of his problems I wanted to see him so bad. I had some fear in the days before because I felt like it had come too soon, that I wanted him to stay with me as long as he could. I loved feeling his kicks and swirls; he was a very active little boy. Even when he started lodging his feet under my ribcage every time I sat down, I loved knowing he was there and alive, it gave me hope when I had very little.
I was warned beforehand that no one knew what was going to happen when he came out, if he was even going to live after birth because his lungs may not be developed enough. So I was forced to decide what I wanted to do in the worst case scenario. I had to plan for his cremation, research funeral homes, pick out his urn and my cremation jewelry, all while he was still very much alive and inside my belly. I don't ever wish that on anyone. No parent should have to plan their child's disposition before they're ever born. But in some strange way it gave me a sense of peace to know that the decisions were made. That in that worst case scenario I wouldn't have to make any of them while I was in shock.
The day came, and I had packed our bag the night before. My mom came in from Illinois to be there with me, and I appreciated it as I needed all the support I could get. She had been there for me throughout the ups and downs of my pregnancy and I felt like she was one of very few people I would've been comfortable with being there. James' dad offered to come, and later his mom and sister, but he decided not to have them come. I checked in and was put into a room, given a gown to change into and had two IVs started, one in each arm. They wanted to have them already established for the surgery and for later just-in-case. I wasn't allowed to eat or drink anything after midnight, so when I didn't get into surgery until almost three I was pretty much miserable.
They finally wheeled me into the OR, and James got changed into scrubs so he could come be with me in surgery. They told him they would do all the prep and then come get him before they actually started. They put a spinal block in place and started the medicine that was supposed to cut off all feeling to my lower half. They tested my senses every few minutes, and I kept feeling pain, and could still wiggle my toes on one foot. This worried them, so they decided to do another spinal block to be for sure this time.
But, for some reason, in between deciding that and actually doing the second spinal block, they gave me a dose of nitrous gas. I've only had it once before, when I was very young, but I vividly remember the psychedelic experience I had while getting my teeth pulled. This time was no different; in fact it was much, much worse.
Before I knew what was going on the operating room started to fade away, and I was on a white plane of nonexistence, floating outside my body. I thought I could vaguely determine sounds from very far away, but I was convinced that everything that I could “remember” was all just a dream, that this plane was reality and I was “waking up” from this other world. I remember being very sad that I wouldn't be able to see my family again, or James, or of course my baby. And after what seemed like an eternity I started to be able to detect distinct voices again and started to come back to the real world. I had no comprehension of how much time had passed or what was going on, so I immediately started taking a mental inventory even in my still slightly altered state. Basically, (looking around) ok, I'm still in the OR, (felt my belly) my baby is still inside of me…and they're just now doing the second spinal block
I still haven't figured out why they knocked me out in that in between period. Coming back to reality was a very mentally changing experience. It was like beginning the hallucination, only in reverse. I had to come back to realizing that it was a hallucination and that all the things I had “decided” in the other realm weren't true, that I was back in the real world. I had just been thrown out of my body and now had to regroup as I came back into it. I was very nauseous from the gas and threw up into a pan that the nurse held for me while they were working on my back. It wasn't particularly uncomfortable though because they had given me that drink that neutralizes your stomach acid before I went into surgery.
Shortly after that they laid me back down and set all the operating equipment back up, draping the sheet across my mid torso so I wasn't able to see what they were doing. Apparently they had started before I was sure what was going on, because I heard later from James that he was upset because they told him they would come get him before they started. He came in and sat by my head while the surgery was in progress, and giggled with me at my still loopy babbling about what I could and couldn't feel, and about my recent out of body experience. It was the strangest feeling I've ever had, the slight pressure as the doctors cut and tugged at my skin and muscles and eventually my uterus, but experiencing no pain. They then told me I might feel some pressure, and that was a vast understatement. What I gathered from feeling alone, one doctor placed his hand on my upper abdomen, at the base of my ribcage, and pushed down much harder than I was expecting. At the same moment another doctor was pulling on my uterus, and it felt like they were trying to rip my whole belly off in one piece, but still no pain.
Moments later I heard the cry of my firstborn son. It was a small thing, short and sweet and then quiet. James and I could do nothing but stare at each other and grin, and a peace came over me like I've never felt. He was born at 4:07 pm, and we later found out that he weighed 5 lbs. 10 oz., and was 19.2 inches long. They weren't able to show him to me because they had to take him straight to the NICU, but they came and got James so he could come cut the umbilical cord. He came back to me minutes later, while they were still stitching me back up, and all he could say was “He's pretty,” and grin even more. They told us later that he breathed on his own at birth, they just decided to put him on the ventilator anyway to give him some help because the omphalocele was weighing down his chest a bit. One of the doctors poked his head around the curtain to tell me that he was doing fine, and that they had noticed some small nodules on one of his ears. I found it strange at the time, but later I found out the truth about them.
Once the surgery was done I was wheeled down a long hallway and into an elevator to be taken down to the recovery ward. They said I would probably be there about an hour, but I was released after only 30 or 40 minutes because I was very coherent and had no problems they could see. The nurses cleaned up the blood and put a thick pad in place for the beginning of my lochia. I was put on a pitocin drip to encourage my uterus to contract and return to its normal size. They also massaged my fundus quite a bit to get it to firm back up, and I just had to grit my teeth and endure as it was very painful on my fresh incision. They decided I was doing very well and sent me back up to my room where James and my mom were waiting anxiously. Mom told me later that when he came back to the room after surgery that he was tearing up through his smile and hugged her tightly, but by the time I got up there he had calmed down again. Initially they weren't in the room when I got there, since they had been told it would be longer than it was they had gone down to eat and have a cigarette. So they were a little upset when they got back, but it was quickly glazed over by excitement.
The anesthesiologist came by to check on my legs and warn me that I may have a bad headache the next day since I had to have a double dose of the medicine they put in the spinal block, but that I shouldn't be in too much pain for a few hours because of the morphine that was mixed in. It was very frustrating because that also meant it took my legs slightly longer than they should to regain feeling, and I wanted so badly to get up and walk around so I could begin recovery and go see my son in the NICU. The nurses came in and out throughout that time, checking my incision and giving me pain medication through the IVs that were still hooked up in my arms. I had to finish the pitocin drip, and I was given some fluids as well, but I still had a catheter in place so I never felt that I needed to use the bathroom. We spent the next few hours talking about Eagan because they had gone to see him already and were telling me about how beautiful he was and his thick head of black hair. James encouraged me that he didn't look very weird at all. We were worried about how he was going to come out knowing that he had the omphalocele and the enlarged head circumference, but he said that it wasn't as big as we had thought it would be, and that his head didn't really look odd unless you were really looking for it. We also talked to some of the doctors and nurses, and the NICU social worker some more during this time. I was still very much in shock, so when they were telling me about all the other problems they had found that couldn't be seen on the ultrasound, and the possible diagnoses, all I could really do was nod and say “Yeah,” a lot since I wasn't really registering all of it at the time.
Once my legs came back to life, the nurse helped me to the bathroom and showed me how to use the squirt bottle to clean myself up while I was bleeding heavily. I had wanted so bad to get up and move around, but once that was made a reality it was suddenly much less appealing. The pain medication helped, but it really just took the edge off and I was still in a lot of pain trying to move around. I was given a second gown to put on like a robe since I hadn't brought my own, and we all went out to walk around the hall, me clinging to the railing and James most of the way. I soon got tired, and we went back to the room. They called down to the NICU to find out if it was ok for us to come down and see him, and we were given the ok so the nurse brought me a wheelchair so I didn't have to try and walk there and back on my own. The NICU was very dim and quiet since it wasn't until about 11 pm that I was able to go and see him. It wasn't very large, so it was somewhat close quarters at a few points as we made our way across the room with me in the wheelchair.
I became very nervous as we approached his bedside. I once heard it described as like meeting someone for the first time that you've only spoken to on the phone, and it was something like that except obviously I was much closer to him than just speaking. It was still very hard for me to make the connection in my head for a while though, that this gorgeous sleeping child was the same little boy that had been dancing around inside of me for the last 8 or 9 months. He had always had so much energy in my womb, but they had to sedate him because of the breathing tube and wires, and the omphalocele, so he didn't hurt himself accidentally. He had lots of beautiful thick black hair, and it looked as though it might've been curly had it ever grown out more. My mom had remarked how much he looked like me as a newborn, as I also had the thick black hair and eventually lighted up. His skin was perfect and smooth, so beautifully soft and delicate. It was a sort of reddish tanned color, as I was later informed sometimes happens in premature babies because their skin in thinner and the blood is closer to the surface. I was so scared to touch him, he was hooked up to so many monitors and tubes and wires, I was terrified I would accidentally mess something up. And they were insistent about washing our hands thoroughly before touching him so that he didn't catch anything, so James and I were very paranoid and doing it too much. They also didn't want him to be stimulated too much so they didn't have to sedate him any more than they already were. He was never conscious when I visited him, but I believe he knew we were there, and that he recognized me. I was fascinated with his gorgeous tiny feet and long little monkey toes, and when I touched them he always curled then back toward my fingers as if to let me know that he knew I was there.
I didn't notice it at first, but one of the times I visited him they had his head laid on the opposite side and I was able to see the “nodules” they had been talking about. In reality he was missing almost the entire ear. The ear canal was closed off completely, and his ear was merely a small bit of a lobe with the nodules that the doctors had mentioned. It was one of the stranger things that was wrong with him, to me anyway, that his right ear was perfect but the left was almost missing. And the doctors never actually addressed it with me, but compared to the rest of his problems that was really superficial.
The next few days are almost a blur now. If I think about it I can remember most of it, but it's not something I really think a lot about. The next few days consisted of me trying to walk as much as I could manage and nurses coming in and out to monitor my vital signs and administer pain meds at all hours. I was also taught how to use the automatic breast pumping machine they had, but I could never get anything more than a few drops of colostrum, nothing I could collect. After a day or so of pumping every few hours and getting nothing I decided it wasn't worth losing sleep over since my baby couldn't even eat anything until after the TE fistula was fixed. They said I should pump because they wouldn't want to feed him formula after that was fixed, but I think in the back of my mind I knew all along that he wouldn't make it that far. I believe I really knew it the whole time, it was just that the shock had put me in such a state of denial I kept thinking maybe, somehow, he could miraculously be ok. Even when the doctors were trying to explain the seriousness of his brain damage, and how even though he could probably survive all the physical surgeries he would still never be mentally capable of much and would require 24 hour care…I just kept nodding and saying “Ok,” and continuing to be unsure.
Also during this time we were informed of all the other problems he had that couldn't be found on any of the ultrasounds. They had done x-rays and an MRI since he had been born and were able to see more clearly the things they couldn't see on the fetal MRI that they had done at 28 weeks. Despite what the pediatric cardiologist had said from the ultrasounds he had a ventricular septal defect. But she had said that it's very difficult to see the heart on an ultrasound once the ribs have hardened because they cast shadows across the inner torso. The worst news, though, was that he also had a tracheoesphageal fistula. In short, his esophagus stopped short just below his neck, and his stomach was connected to his lungs. So was getting air into his stomach and stomach acid into his lungs. This became a problem on the second and third day when he began to rely more and more on the ventilator, but there was a leak around the tube so they were having trouble keeping his oxygen levels up. But they didn't want to change it to a bigger tube because if he got too much air in his stomach it could rupture, and it was inside the omphalocele.
I maintained this fog until the day of his first scheduled surgery, to repair the TE fistula so he could be fed by mouth and wasn't damaging his lungs anymore. They finally had us meet with them and come up with a decision. I wanted to keep running from it, I felt like it was too soon for me to decide whether he lives or dies on the spot. They gave us a few hours to talk about it, and as soon as we got outside it just washed over me. We could not keep this baby. It would be too cruel and selfish to force him to endure all the surgery it would take to “fix” him, for years since the omphalocele couldn't be fixed until he was 2 or 3 years old. And with all the brain damage he was probably blind, and would likely have had severe cerebral palsy. He would've had no quality of life, and neither would we if we had to watch him constantly. He would never go to school, or be able to go to day care even…it was just too much. We went back upstairs and found the doctors to let them know our decision.
They all agreed that it was the best thing for him, and for us. They gave us some time to go eat something while they prepared him for us. My mom had gone to Target to get a few onesies for us to put him in, since I hadn't brought anything at all with me. We hadn't really bought much of anything for him since we knew there was so little chance that he would survive. We decided on a pale green striped one with little monkeys all over it, since we had been talking so much about his adorable monkey toes. We had brought a blanket that my grandmother had made for him, it was crocheted and a soft yellow.
Once we made our way back up to the NICU, they had a room prepared for us in the back of the NICU, with dim lighting and chairs, so we could spend time with him isolated from the other babies and any parents that might come in to visit their hopefully more fortunate children. They had told us before that they would be using the bag to keep him breathing until we decided to have it removed, but instead they brought the ventilator machine in the room with us so they wouldn't have to be hovering over him the whole time.
This was the first time, and all too soon the last time, I ever held my beautiful son. They brought him to us on a small, thin blanket with cute jungle scene on it, because of the monkeys on the onesie. They carefully laid him across my waiting arms, already draped in the blanket we had brought, and he was heavier than I had expected, but I knew he was a big baby for how early he was. He smelled faintly of citrus, but I wasn't sure why. I had never been good with babies, and had always been scared to hold them, but I'm sure most new parents go through the same phase, except they actually get the chance to perfect the art. We had to keep his head just right while the ventilator was still in, and he also still had an IV to keep him sedated and pain-free. Again, he was the most amazing and beautiful thing I had ever seen. He was so perfect, even with all his deformities, he was perfect in his own right. His skin was the softest and sweetest…I am at a loss for words as I type this. I knew then what it was like to be a mother. All the times my own mother had told me that she loved me; I now knew exactly what that really meant. I had never loved anyone or anything so much before, I had never experienced that depth of emotion ever before. This gorgeous creature had been created inside my own body, and I never wanted that moment to end. He still responded to my touch on his feet by curling his toes and lifting his feet toward me, and I was so happy when he wrapped his little fingers around mine. He never once opened his eyes, so I was never able to see what they looked like, but now I think that was probably for the best. The nurses said when they did the response testing on him with the flashlight his eyes didn't point the same way since he was probably blind. He did react to changes in light though; he flinched when the NILMDTS photographer used the flash. She took lots of pictures of us holding him while the ventilator was still in, but I only let her take a few after it was removed. At the time I made that decision because I didn't want any pictures to exist of him after he had passed, and there was no way to know how long that might take. I regret that decision dreadfully now; he lived for several hours afterward and we could've had so many more of him without the tubes covering his face. We did take a few with our own cameras, and those are my favorite pictures of him by far.
I wasn't keeping very good track of time, so I'm not sure how long we held him with the tube still in. I passed him on to James, and to my mom, and we all spent time with him while he was still somewhat responsive. I was terrified to have them remove the tube, because we didn't know how long we would have with him after, but eventually I knew I couldn't delay it any more. We called in the doctors, and together a few of them took the tape off of his face and then slowly removed the tube from his throat. I immediately regretted that choice, as he became essentially lifeless the second the tube came out. Where he had been at least responding to my touch before, his little body went limp and his only movements were the tiny little “guppy breaths” the doctors said he might be continuing for some time. He couldn't be declared dead until there was no detectable heartbeat, so we held him for the approximately 5 or so hours it took for his heart to stop. This was the longest night of my life.
We traded off a few times throughout so that my mom and James could spend time with him while he was still breathing too. It hurt me so much, and made me so happy at the same time, to watch how wonderful a father James was to him, how delicately he held him, insuring his head never sagged too far or he was never uncomfortable. My mom was visibly breaking as she spoke softly to her first grandchild in his last hours. I still cried a bit, but I had the peace of shock to rely on throughout the process. I had to leave to take a bathroom break halfway though, and I remember laughing to myself about the indentions in my forearm from the crocheted pattern in the blanket under his weight. He would take a few breaths in a row, and then there would be a gap, so it was unpredictable and actually made me jump a few times which James found amusing. I suppose it was our way of coping with the horrible situation, laughing at the little silly things along the way. His skin became increasingly cool to the touch and started to lose its color as the night wore on, but I couldn't think about anything but how gorgeous and soft he was, until it came down to the last hour or so…
A few times toward the end we had the doctors come and check his heartbeat to see how much it had slowed, and possibly make a guess at how much longer we had him with us. Much closer to the end, they had an emergency c-section come in so they warned us that they might be out of the room for a while. He hadn't taken a breath in several minutes, and at the same moment James and I just knew that he was gone. He “felt” different after that, like we could feel that he was no longer with us. I tried to get him to go get the doctor, but they were all busy working on this new baby. I was frustrated to tears, I just wanted someone to come tell me my baby was dead and give the time of death accurately. I decided, thinking about it later, that I thought it was beautiful that another baby came into this world in the same moments that mine was leaving. I often wonder if that baby survived.
Finally the doctor came back and said that his heart had stopped. His time of death was decided as 10:06 pm, on May 3rd, 2010. They unhooked his IV tubes and I was allowed to hold him as long as I needed. I just cried and carried him around the room, hugging him to me but being careful not to bend or twist anything unnaturally. I kept my lips rested against his forehead, and even though it was now cold his skin was still amazingly soft.
I carried him around the corner back to his bed, and they started to help me lay him down to be bathed. I couldn't get myself to put him down, so they left me alone a while longer. A few minutes later they helped me pull the blankets from under him and lay him back into the bed he had once lived in, what seemed like days ago. His lips were beginning to blue, and his skin now had a pale yellowish cast. One of his eyes had started to droop, but didn't come open. He was still so incredibly beautiful, I can't even come up with any better words to describe him. I had originally been opposed to helping with his bath, but after holding him through this ordeal I decided that I was his mother, I should be the one to do things like that. But once we started and I began removing the tegaderm bandage that was keeping his IV line in place (using an oily pad meant for that purpose, which smelled like citrus which was what I was smelling earlier), I was so scared I was going to tear his skin or something. While we were taking off the tape and stuff the social worker and a nurse had begun making plaster molds of his feet and hands. They tried to get me to help, but I just couldn't stand trying to force his lifeless fingers to straighten out to be placed in the mold. I realized there was no way I could keep doing this, I was getting so annoyed with the nurses giggling with each other about how difficult it was to get proper molds of his hands because the fingers kept curling…I wanted to scream, do you realize this is my child?! I spoke up about not being able to handle it and they left me alone with him again, except for the doctor who sat at the table nearby filling out paperwork. All I could do was cry, and lay my body across him so that my arms encircled his tiny frame. I tried to leave several times, but could never get more than a few feet away. I just couldn't bear the thought of leaving my son on that table with these people who didn't really know us or him or anything, although in reality they spent more time with him than I did while he was living. I just wanted to die right there with him on that table, I couldn't imagine living without him. James finally convinced me to go so we could fill out some more paperwork and talk to the genetic counselor that was waiting for us.
In the next few days I was like the living dead, or so it felt. I woke up crying, I never felt like eating, or showering, or getting dressed, but unfortunately I was still in San Antonio, and we still had to make cremation arrangements with a nearby funeral home, and get the paperwork turned in for his birth certificate, and later his death certificate. I was on auto pilot, finding a bit of solace here and there…shock and percocet is a wonderful combination.
I spent every morning crying for at least an entire week or two, then I still cried every day at some point for a few more weeks… It never goes away, it just gets more manageable.
My first Mother's Day was about 6 days after he died. We decided not to do anything big, but I dressed up and put makeup on for the first time since before he was born, and we went to a family owned Italian restaurant I picked. When we got there they were handing out long-stem red roses to women that were obviously mothers. They didn't ask me, until later, and when they did they didn't ask if I had children, they asked if I celebrated Mother's Day. I shyly said yes, so they gave me one too. I dried that rose and now it lies across our mantle in front of Eagan's urn.
I don't know what's going to happen next as of yet. I've gone back to work, and I'm trying to get out of the Army on a hardship discharge or something similar. I just can't keep up with this life anymore and I don't feel like I'll ever be able to be a functional soldier again. Hopefully that will be resolved within a few months and I'll be able to move on in my new life as a mother without her child…
James and I plan on TTC again eventually, but right now I'm terrified to be pregnant again. I desperately wanted another child in the weeks immediately following Eagan's death, but now that it's been a couple months I'm so scared. I want James and I to be able to be just us for a while first, to see how our relationship withstands my mood swings and depression through all of this.
Eagan Nathaniel, April 30th-May 3rd 2010
You were the most beautiful thing I've ever seen, I love you more than life itself and I'll never regret the time I was allowed to have you, or the decision to let you go...
“Loved with a love beyond telling, missed with a grief beyond all tears.”
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1 comments:
What a wonderfully written story of your life and your son's life. I too at your young age had a past with other men that I do not like to think about. Then, I met a man that I have been with for twenty years now. Your son's brief life was meant to be and I only wish you the best for your future.
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