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Post On Sunday, March 04, 2012 By Jessica
To begin the story of my journey, I was 26 years old, happily married to the love of my life, and pregnant with our first baby. The pregnancy was a pleasant surprise, and from the very beginning we were adamant about taking great care for our new arrival. I would take a handful of vitamins everyday, as well as exercise and eat healthy to make sure our little one was getting all the things he needed. We read books, planned, and I even kept a daily journal of my pregnancy as a keepsake for his future. My pregnancy was progressing beautifully, and I was lucky to have a very smooth pregnancy- I didnÃ¢â‚¬â„¢t even have a single day of morning sickness!
When I was 20 weeks pregnant, on October 2nd 2011, I was at the grocery store shopping when I first noticed a slight pain in my abdomen. I dismissed it as a typical symptom of pregnancy, and continued about my business. Unfortunately, as the night wore on, and eventually turned to morning, the pain increased significantly. In the morning I debated calling out of work for the day, but decided to call the doctor instead and go in that day for an appointment. When I called to schedule the appointment, the receptionist informed me I needed to speak to a nurse before she would schedule my appointment. After I described my pain, the nurse strongly recommended that I go straight to the hospital and be seen in the emergency room. I called my mom, an RN, in a mild panic and related the story to her. She also recommended I go to the hospital. My husband and I called out of work and went to the hospital where I was evaluated and diagnosed with acid reflux. I was told to go to the pharmacy and get some antacids to relieve the pain, and go home and rest for the day. My husband and I went straight to the pharmacy and bought some Tums.
The pain continued throughout that day and the next two days, with no relief from the Tums, so at this point I called my doctor back to schedule a same day appointment. She confirmed the diagnosis of acid reflux, and prescribed pain medication as well as an acid reducer to control the symptoms. She also said that if the symptoms do not get better within a few days of taking the medications, or if the pain gets worse, to go back to the emergency room. Unfortunately, the pain continued and did get a lot worse that evening. I decided to go back to the emergency room on October 5th, where I was evaluated by a nurse and sent home with instructions on how to care properly for acid reflux. Needless to say, even with the pain medication, the pain continued throughout the next few days.
On Sunday, October 9th, one week from the day I had first felt the pain, I went for a walk with my husband and I noticed that my hands were swollen, and the swelling continued up to my arms. I remember him joking with me and telling me I looked like Hulk Hogan. It was after we got home and cooled off that I began to become more concerned because the swelling had not gone down, and the pain in my abdomen was intensifying greatly. We decided to head back to the hospital, and at this point, I was in agonizing pain.
After spending hours and hours first being seen in the OB Triage, then the emergency room, I was finally admitted to the hospital at 4:30 am. Once admitted, the doctors did some blood work and took urine samples. At first, all seemed well. I was able to get some sleep and was beginning to feel a bit better, and I even had some visitors come to see me that evening. The pain began to intensify once again, to the point where I was so agitated I could not sit, stand, lie down, walk, or stay in one position for more than a few minutes at a time. I was willing to do anything to bring the pain down. Luckily an I.V. had already been started in the emergency room, and the nurse was able to administer pain medication. I had been in contact with my parents (my mom in particular) since the pain began a week prior, and when I was admitted to the hospital, my mom asked me if I wanted her to fly out to see me, and I agreed that would be best Ã¢â‚¬â€œ something just did not feel right. Luckily, my mom was able to get a same day flight and arrived at the hospital the first night that I was admitted. She arrived at the hospital a few hours after I began experiencing the worst pain yet. At this point, the nurses were becoming concerned and were administering pain medication every hour- its maximum dosage allowed. Although I became less agitated, I was still in a lot of pain and began asking for the pain medication after 45 minutes. For someone like me who takes about 2 Tylenol per year, this was unheard of.
It was at this point that my memory began to escape me, perhaps due to the immense amount of pain I was in and the medications, to this day, IÃ¢â‚¬â„¢m still unsure. From here on, I will relay my story as best as I remember it, and will insert parts that were later told to me by my mom and husband.
The nurses began to scramble around and look worried, and my OB doctor began to think I had preeclampsia. My mom and the nurse had never heard of this, so she tells me they went outside my hospital room and looked it up on my momÃ¢â‚¬â„¢s blackberry. The next thing I remember, I was being told that I was being moved downstairs to labor and delivery. Everyone seemed in a hurry, and I remember them talking amongst themselves about how to move me- at this point the pain was unbearable and I could hardly move, and was unable to talk about a whisper. The nurses decided to keep me in the bed I was in and to wheel me downstairs. I remember there was a buzz about this because they had to make special arrangements for this, due to the fact there was already a bed in the room I was going to, and it was equipped for what I was unknowingly about to endure- whereas the bed I was in was for the room I was in at the time.
The doctor spoke to me briefly about what she thought the diagnosis may be- I remember her telling me it was possible that I had preeclampsia and that if that was the case, IÃ¢â‚¬â„¢d have to deliver my baby- but she did not confirm this diagnosis quite yet- she wanted to be certain this was the case before taking any further action.
After being wheeled downstairs to labor and delivery, I was set up in a new room. This is when things turned from bad to worse. I was introduced to a hematologist as well as a perinatologist. I had never met a hematologist or a perinatologist before, and wasnÃ¢â‚¬â„¢t quite sure of the reason for their presence in my hospital room. There were also a few nurses in my room, and I distinctly remember looking around the room at all of the people and activity, and noticing the looks of worry and concern on each face. This is when I turned to my mom and asked her to become my power of attorney. The nursing staff called in their on-site social worker who brought the paperwork. I sat watching all the activity while my mom filled out the paperwork for me- it seemed so surreal. I signed my name with the witness of the social worker, and was prepared in case I was unable to make any of my own medical decisions.
My OB doctor came over to me and told me the grim news- I had severe preeclampsia and HELLP syndrome, and the only cure was to deliver my 21 week old baby. I was devastated at this news- I knew my baby wouldnÃ¢â‚¬â„¢t survive because she had told me it was very unlikely and in that in the state we live in, hospitals will typically only try to save the baby after itÃ¢â‚¬â„¢s 26 weeks or older. He simply was too young to survive. She continued to explain to me that if I didnÃ¢â‚¬â„¢t deliver this baby, I would only get sicker, and I was very sick as it was. Something inside me, something that I feel guilty about to this day, and something I can hardly describe, said to her Ã¢â‚¬Å“Take it out of me.Ã¢â‚¬Â It wrenches my gut to know I even considered those words, let alone uttered them. But upon reflection, I believe it was my sheer will to survive that had taken over.
At this point in time, all of the horrible effects of severe preeclampsia and HELLP syndrome were in full effect- my liver was extremely swollen, I had fluid in my lungs, my brain was swelling, my hemoglobin was dropping rapidly, my blood cells were being destroyed, I had severe swelling of my entire body, over reactive reflexes, my liver enzymes were very high- indicating liver dysfunction, and my blood pressure was 210/110. The doctors and nurses were worried that if they didnÃ¢â‚¬â„¢t do something soon, I would either begin to have seizures, go into a coma, bleed to death, or have any number of complications due to the state of my illness. Thank goodness for the perrinatologist, who took over the room as the anxiety escalated. He ordered magnesium sulfate, as well as demoral, and possibly something else Ã¢â‚¬â€œ my memory fails me. This helped to stabilize my blood pressure a bit- it went down to about 180/110- where it remained there for a few more hours.
At some point in time, my mother called my father and told him to get on the next plane, and she asked my sister to stay at home and be the contact person to inform the family of my deteriorating condition.
The doctors decided it was best for them to induce labor, but with this being my first pregnancy, and given the state of my condition, they needed to take all precautions and be prepared for a possible caesarian section. Due to the possibility of my condition becoming more severe before giving birth, they decided to move me to a room closer to the operating room just in case. I remember laying in the bed and looking up at the ceiling and at the things around me as they wheeled me to the third room for the day. I saw some equipment on a high shelf that was covered in plastic, and I remember thinking Ã¢â‚¬Å“Why are they taking me to a part of the hospital that is shut down? That doesnÃ¢â‚¬â„¢t make sense.Ã¢â‚¬Â I later found out this was a wing of the hospital that was being renovated to become the rooms for the moms of the sick babies- an extension of the NICU- not the place where they were taking me at the time. I was put in lucky room number 13 Ã¢â‚¬â€œ it was directly across the hall from the operating room. The doctors later told me they were worried about operating on me if they needed to because they were afraid I would have bled to death on the operating table.
The doctor began the induction process Ã¢â‚¬â€œthis was a very uncomfortable process considering they need to manually insert the medication into my cervix. With the magnesium sulfate and the new pain medication, I was in considerably less pain. All I had to do then was wait until my body began the labor process. It was at this point that I called my boss and briefly explained my situation and that I was going to be out of work for a few weeks. My dad finally arrived, and we all sat around, waiting. This was the longest wait of my life, or so it seemed. In all, I was given two more dosages of medication to induce labor, and had to wait 13 hours to begin the labor process.
I met a new OB doctor, and after my condition had not improved, she decided to break my water. It wasnÃ¢â‚¬â„¢t much longer after this that I was finally ready for labor- because my baby was so small, I was only required to dilate to 5 centimeters. When the doctor checked the baby, she found he had flipped over and was no longer breech, although his shoulder was getting lodged. I had to wait until I dilated to 6 centimeters before I could begin labor. Of course, my little boy had been very active throughout my pregnancy, and being the active on that he was, he had flipped back to being breech. The doctor did not want to chance my wasting any more time, and decided to begin.
Unfortunately for me, the doctor decided to give me pitocin, a drug which induces very strong and frequent contractions. The nurses were asking me which pain medication I would like Ã¢â‚¬â€œ a PCA pump or demoral. I had opted for the PCA pump considering when I wasnÃ¢â‚¬â„¢t in labor and was taking the demoral, I needed it every 45 minutes and even then it wasnÃ¢â‚¬â„¢t helping the pain. Considering I was now in labor, you bet I asked for something other than the demoral. Little did I know what a contraction with pitocin felt like- I soon found out.
It didnÃ¢â‚¬â„¢t take long for my little boy to be born, feet first and all. He was born at 3:01 am on October 12, 2011- the day he turned 22 weeks. My husband and I had opted to keep the sex of the baby a surprise, but we both were thinking it would be a girl- we were so surprised when our Ã¢â‚¬Å“girlÃ¢â‚¬Â turned out to be a beautiful little boy! I was so proud of my husband for standing by my side, and cutting the umbilical cord- he didnÃ¢â‚¬â„¢t faint! My mom and him were so supportive during the entire ordeal, making sure to keep a cold washcloth on my forehead, keep the ipod playing, and keep pushing that PCA pump whenever the little green light came on indicating 5 minutes had passed and I could administer more pain meds.
Immediately after Christopher was born, the doctor placed him on my stomach and I was able to take my first look at his beautiful features- they were exactly that of my husbands. He was so tiny and precious. He was not breathing when he was born, and for this, I count my blessings. He looked so peaceful and calm. He was taken away from me to be cleaned and weighed and measured. He weighed 13.5 ounces and was 10 Ã‚Â½ inches long. During and after delivery, I lost a lot of blood- approximately 2 pints. The doctor was anxious to remove my placenta- the placenta is what my body had reacted to and is necessary to come out Ã¢â‚¬â€œ itÃ¢â‚¬â„¢s the the start for the Ã¢â‚¬Å“cureÃ¢â‚¬Â for preeclampsia. Unfortunately, this was harder said then done. I only remember bits and pieces of this time, but my mom later told me it took the doctor over two full hours to remove it- the time being 5:31 am.
I woke up later in the morning exhausted, happy, and deeply sad for the loss of my little boy. The next few days in the hospital were a time for recovery. My blood work began to slowly improve, and I was able to do more things on my own, slowly but surely. I had the opportunity to visit with and personally thank each of the three doctors that had helped to save my life: the perrinatologist, who took charge of the situation at the time of most need- he prescribed the medications and the care that I needed most, the OB doctor whom had patiently awaited all my lab work before correctly diagnosing me with severe preeclampsia and HELLP syndrome, and the OB doctor who was persistent on delivering my baby and my placenta before my condition got worse. I later found out that had she not been so persistent with the removal of my placenta, the only other option would have been surgery, and as stated before, this would have been extremely dangerous given my condition. I am still grateful for all of their care and hard work.
I was faced with many difficult challenges in those days following the birth of my son- ones that I never would have dreamed of. My husband and I were forced to make decisions we had never discussed prior to this occasion. No mother or father ever plans on making death arrangements on the day their only child is born. After some discussion, we decided to have him cremated. We were given options from the hospital of crematories to choose from, and having no experience with any of these, choose the only one that had a working website and decent cost- this was yet another aspect of this ordeal we had not anticipated- the financial stress of planning your childÃ¢â‚¬â„¢s unexpected funeral. We then had to pick out an urn- which was difficult in itself due to the sizes of available urns and our needs- and the engraving. The hospital staff was wonderful throughout this entire process, and were constantly checking up and helping out whenever they could. I felt overwhelmed and incapable of handling the details of the arrangements. I simply helped my husband to decide on an urn and the engraving we both liked, and let him handle the rest. I donÃ¢â‚¬â„¢t think people are aware of all the little details of this planning that is involved Ã¢â‚¬â€œ such as the death certificate, the release forms, the pick up, the faxing and paying, etc.
Another difficult decision I made while at the hospital was to see my son again before my departure from the hospital. The hospital will keep the baby there until the motherÃ¢â‚¬â„¢s release, at which time the funeral home or crematory will come and pick up the baby. I choose to see him again because I felt it was the right thing to do. I had only seen him once, and for a short time. After they had taken him away to be cleaned up and weighed and measured, the staff had offered to bring him back to me to hold, and at that time, I did not want to hold him again for fear that I would further bond with him and be to distraught. I could not fathom it at the time. I knew this was the last opportunity I would have to see and hold my baby again.
The day after I delivered him, and the day before I left the hospital, I decided I wanted to see him again one last time. After my parents went home for the night, and it was just my husband and I, I informed him of my plan to see our son. He did not want to see our son again, as he had already said his goodbyes. This was our first hurdle in the loss of our child. He wanted to stay at the hospital to support me, yet he did not feel comfortable seeing the baby again. I wanted to spend my time with baby Christopher alone. My husband left with a burden on his shoulders that night.
I asked the nurse to bring him in to see me, and she said it would just take about 15 minutes. I waited and waited, steeling myself for this final blow. After 25 minutes, she returned and apologized for the delay- there was an urgent matter the nurses were taking care of and they would have him back to me soon. After another grueling 15 minutes, he was brought in to me in a moses basket and wrapped up in a blanket. He was so tiny, when he was placed on my lap, I could hardly believe he was so light, even in his basket. I remember gently pulling him out and holding him to me. It was so bittersweet to hold and kiss him. I spent 40 minutes holding, kissing, looking at, and talking to him. That time was so precious and filled with so many mixed emotions Ã¢â‚¬â€œ absolute love, deep sadness, joy, appreciation, and awe. ItÃ¢â‚¬â„¢s impossible to describe everything I felt during that special time. Those brief 40 minutes is a time I will never regret, and I will always cherish, yet it was one of the hardest things IÃ¢â‚¬â„¢ve ever had to endure. Saying my final goodbye was by far the hardest- I never wanted to stop holding him. When I called the nurse to come retrieve him, I asked her for a sleeping pill, because I knew that if I were to sleep that night, my dreams would have been plagued with nightmares.
The journey of recovery since his birth has been a long one. At first, I was able to focus on getting better physically, which is much easier than compared to the emotional recovery. My parents were able to stay with me for the first week after I returned home from the hospital, and my husband was able to remain with me for two weeks afterwards before having to return to work. It is very difficult to go through an ordeal like the one I went through. Death is always a difficult ordeal, but for me, it was especially difficult to handle considering I am young and perfectly healthy. My husband and I, as well as our family, were planning on bringing home a baby from the hospital in 5 more months. Instead, weÃ¢â‚¬â„¢re left picking up the pieces of a shattered dream. This means no more baby shower, no need for the clothes and washcloths and towels I had bought for him. No more need to plan a trip for my family to fly out and help with the new baby. No need for us to have reorganized our entire apartment to accommodate for a baby, and no need for all the maternity clothes that were recently donated to me. Instead of all of those dreams of the joys of raising a child, we are now left with decisions such as where to place the urn, and what child grief support group meeting to attend. We are now grieving the loss of our first and only child.
There were times when my husband was silently angry for days on end, and I cried every day. Some days were nearly impossible for me to gather the strength to get out of bed. I slept a lot in those first 4 weeks afterwards. I found it helpful to talk with my husband about what we were feeling- although we were expressing our emotions in completely different ways, we both felt the same things- anger, hurt, and confusion. As the days passed on, the small tasks that I initially found so difficult to do became easier. I remember one of the hardest times for me was the first day when my husband had to go back to work- just two short weeks after out loss. I was scared of being alone and was adamant about having a friend come over for the day to stay with me- this was the best choice I could have ever made- the morning my husband left for work, I was seriously contemplating suicide. The arrival of my friend helped me tremendously- her mere presence forced me out of my lowest point, and I was soon surrounded by her love and friendship. I then realized my lowest feelings were the ones that I had been afraid of, the reason why I was so scared to be alone.
As if this wasnÃ¢â‚¬â„¢t enough of a hurdle for us to tackle, we were given the news by my doctor that in the event of a future pregnancy, I am very likely to get preeclampsia again. We are left reeling with this new wave of grief- I was one of the few women to get severe preeclampsia and HELLP syndrome, with no warning, no onset of symptoms, and there is no reason for why it happens, or no answer for when itÃ¢â‚¬â„¢s going to happen, and no guarantee it will or will not happen again. It is like cancer- there simply are not enough answers. There are plenty of theories, and depending on which doctor you see, you will hear different opinions. Now, my husband and I are left with the cold knowledge that if we are to conceive again, there is no guarantee this will not happen again. Ultimately, either we never have another child, or we take our unknown chances and try again. I could not fathom enduring this awful disease and loss again. It was difficult enough losing our first, now we are faced with this dilemma. We plan on getting all the information we can, and we plan on fighting this deadly disease. We will do our damdest not to let this disease conquer us again.
As time has passed, the anger, the confusion, the hurt, they have slowly began to fade. I feel as if these feelings will always be with, buried just under the surface of who I am, who I have become since that time. We are determined to continue on with our lives and never forget our first and sweetest baby. Our journey through grief has been a difficult one, and one we hope to never have to endure again. Fate is out of our hands.
Ella was born prematurely on 6/5/09. Due to her premature status she was required to stay in... Read More