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New here - Due date today (very long)

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New here - Due date today (very long)

Postby Aidensmommy212 » Fri Jun 03, 2011 05:36 pm

by Aidensmommy212 (14 Posts), Fri Jun 03, 2011 05:36 pm

Hi everyone, my name is Nikki. I have been lurking on here for quite some time but haven’t found the courage to post anything until now. I am a (possible) Pre-Eclampsia and partial HELLP syndrome survivor…if you can call it that. Today would have been my due date - which should have been around the time we were supposed to be able to take our son home from the NICU. Here is our story:
My husband and I decided last summer that we were going to try to start our family. We made a plan for me to stop birth control, give it a couple months to get out of my system, and then start trying in August. I remember having taken several cheap pregnancy tests after the first round of trying and they all came back negative – but still no period. I was convinced that I wasn’t pregnant yet but waited another week to test again; I went out early one morning and bought a more expensive, brand-name pregnancy test. I remember sitting in the bathroom watching the positive pregnancy line show up and thinking that I must be seeing things, I yelled for my husband to come look and he confirmed that he saw the line too! We were completely shocked that we got pregnant right away but so excited and already in-love with our baby and our future as parents.
The pregnancy was pretty uneventful for the most part. I was tired a lot during the first trimester and got sick for maybe a month, but other than that things seemed to be going perfectly. We went in for our 18 week appointment on January 4th, they did the anatomy scan and we found out that we were having a BOY…we had already decided that he would be named Aiden!! He was measuring exactly the size he was supposed to and everything looked great. Little did we know how drastically things could change a month later.
A couple days after my birthday on January 25th, I started getting an intense pain in the middle of torso (right below my rib cage and right above my stomach). I brushed this off as pain associated with my hiatal hernia and G.E.R.D. that I was diagnosed with years prior. I hadn’t experienced pain that sharp or severe with it before but I assumed that it was just because my organs were being pushed up from my expanding uterus. The pain was so severe that night that I couldn’t breathe and I wasn’t comfortable unless I was in the shower or on my knees in bed. I was throwing up everything that I tried to keep down including all of the indigestion/acid reducing meds that I tried to take. My husband got so concerned that he ended up taking me to the emergency room at 1am. This was after the nurse practitioner that called me from my OB’s emergency line told me that “if I went into the hospital with heartburn I would just be waiting a very long time”. We got to the hospital and I was seen right away. They gave me some pain meds, did lab work and did an ultrasound to check out my little man and if they could see anything going on in there. They noticed that my liver was slightly enlarged and that my liver enzymes were elevated but told me to bring it up to my OB at my follow-up appointment two days later. They released me with a diagnosis of a UTI (which I was given antibiotics for but had no symptoms of whatsoever).
When I went into my OB’s office for the follow-up, I mentioned the elevated liver enzymes and he told me that he would look at my records and call me if he thought it was anything to be concerned about; in the meantime he referred me to my gastroenterologist to look into my pain further. I never received a call back from him.
That weekend the pain started up again on Friday night and did not leave until Sunday afternoon. I had made my appointment with the gastroenterologist on the following Tuesday so I decided to wait it out rather than go to the emergency room with no results again.
The following Tuesday I went to my gastroenterologist who said that she did not think the pain was associated with my stomach but more likely with my liver (because the pain was shooting down instead of up). She was the first person to ever mention any pregnancy related liver problems to me. She was also the first person to tell me that my platelet count was low from my hospital records. She asked me to go back to my OB, show them what she told me about and make sure they keep a close eye on me. I never got a chance to follow-up.
That afternoon the pain started again and my concerned parents called my OB’s office who told them to immediately bring me to the area’s best hospital for pregnancy related issues. I was admitted that night and did not leave for two and a half weeks.
During my time at the hospital I went through so many doctors with different opinions that it makes my head spin just thinking back on it. The doctor that I had when I first got there was leaving a couple days later for a medical conference in San Francisco. The doctor covering for her over the weekend barely looked at my case and was ready to discharge me because “everything was looking good” at the time. Come Monday, the last doctor covering for her came in and said that things were steadily declining and they would need to discuss having to deliver early (I was 23 weeks along at this point). Imagine being told one day that you can go home and the next day that you might have to deliver your baby who “is not considered viable at 23 weeks yet”. During this time they did another growth ultrasound on Aiden and discovered that he was now measuring 2 weeks behind in size. They discussed the IUGR issues with me but said that he was not considered at that point yet (but was probably on his way there by the looks of it). They also found that the blood flow in one of my umbilical vessels was lower than the others. During this time they were continually checking my blood pressure and doing urine tests on me (although I did not know the reason for them at the time). My blood pressure was always normal and I was not spilling any protein. My liver enzymes and platelets continued to rollercoaster, one day up…the next day down. There was so much guess work and information being thrown at me and my husband that we didn’t know what to make of it. We were told that I had HELLP Syndrome and that the baby was growth restricted and would not grow any more if I stayed pregnant, then other doctors came in and disagreed. There was still the idea floating around that my pain was associated with the hiatal hernia. The doctor whose care I was under the week before I delivered Aiden had me so upset and stressed out that my husband and I referred to her as “Dr. Doom”, who made me cry every time I had to talk to her. I made the decision that the 1st doctor (who was in San Francisco at the time) should be in charge of my care from out of town. She seemed like she knew what she was talking about and did not try to scare me into delivering. She disagreed that I had HELLP syndrome because I did not have the hemolysis but did say that if my blood pressure started rising and went over 140/90 twice, they would have to immediately deliver. They gave me the steroid shots right away (which helped my platelets rebound) and kept checking Aiden’s heartbeat and my blood pressure. After I was told that my blood pressure couldn’t hit 140/90, I was panicked. I had an anxiety attack anytime a blood pressure cuff came anywhere near me. I would lie in bed, hear the blood pressure monitor be rolled down the hallway to me and be screaming inside. The Friday of the 2nd week I was in the hospital, my blood pressure finally hit 140/90 after continually rising the previous days (and by hit it, I mean that it only hit that, never went above the baseline). The 2nd time it hit 140/90, my husband and I immediately started crying. End game. The thing we were fearing and fighting against the most was about to happen and there was no more fight left in us. To this day I still believe that my blood pressure was completely situational and in no way had to do with PE. I never spilled any protein, was never swollen, no weight gain (in fact, at that point I was still down 8 lbs. from my pre-pregnancy weight). They told me that I was severe pre-eclamptic and that they would have to immediately deliver. Aiden was kicking me this whole time, like he was telling me “I’m still here, don’t give up yet”. I was brought to Labor and Delivery that night and put on the mag-sulfate drip right away.
I delivered Aiden by emergency c-section on February 12th. He was 15 oz. and 10.5 inches long and he came out fighting. I remember being in the operating room with my husband holding my hand and they never even announced that he was out. I was lying there listening to any kind of news because I knew that there was a pretty big chance that he was too small to be successfully intubated. I heard the NICU people in the room say that he pinked up right away and that he was kicking a lot, that’s how I learned that he was born. After a few minutes they came over to my husband and asked if he wanted to see him and his response was “he’s out already?” (I was focusing so hard on hearing anything being said that I didn’t tell him that I knew he was already out). He went over and saw our baby boy for the first time and got to touch him for the last. When he got back over to me he was crying and told me how beautiful he is. Soon after, they wheeled him to me for a minute so that I could see him before they took him to the NICU. He was absolutely the most perfect thing that I had ever laid my eyes on; I could tell right away that he had my hands & feet and my husband’s nose and ears.
I was wheeled back to my room in labor & delivery and laid there while family came in little by little to congratulate me. I remember being so happy and peaceful at the time because I felt like if he made it through delivery, he was going to survive anything. The nurses and doctors kept reassuring me that they had never seen a baby that small with that amount of fight in him; he was our miracle baby and we were going to get to keep him. I sent my visitors to see the baby in the NICU with my husband, planning out the long road and months of NICU visits that were going to be ahead of us. I didn’t see him again until the following day because of the 24 hour Mag-Sulfate drip. They wheeled me down to the NICU and I got to sit with Aiden and watch him kick and move his arms around in the incubator. I was in complete amazement, I couldn’t even speak.
Everything came crashing down on me the Tuesday after I delivered. A resident in the NICU told me that Aiden wasn’t doing well and there wasn’t anything else that they could do for him beyond what they were already trying. I called my husband to leave work because we were told that it would be a good idea to spend as much time with him as possible that day. I sat in my hospital bed crying and waiting for my husband so that we could go say goodbye to our son together. The attending came in (who was the head of the entire NICU department) and told us that he was doing better and then told us that there were things they could do if things went wrong again (that resident from earlier knew to stay away from me from that point on). I went to see Aiden as much as I could while recovering from the surgery and still being weak myself. A very kind nurse one night asked me if I had been allowed to touch him yet and I responded “no”. She shook her head as if to say “that’s ridiculous” and opened up his incubator allowing me to touch his hand, his arm and the side of his face. She told me that no matter what the weird circumstances were around our lives in the NICU, I was still his mom and she was his nurse. While she was his nurse I would be able to touch him when he was stable and change his diapers if needed, it was her job to take care of his health and my job to be his mom. For as long as I live; I will never forget those words and being allowed to touch him for the first (and as it turned out, the last) time.
As much as I wanted to stay positive for our little man, I couldn’t shake away the constant fear that was now a part of my every thought. The Thursday that I was to be released from the hospital, we were told that Aiden had a brain bleed and that it was a Level 4 (the worst level) on one side and a Level 1 on the other. We were told that we had decisions to make and that this could mean that he would be blind, deaf, or have cerebral palsy. My husband and I decided that there was really no decision to make. He was our son and as long as he was willing to keep fighting, we would keep fighting for him. I would not give up on him because of obstacles that were a possibility, not a definite. He stabilized over the next several days and I was out of the hospital (with a severe chest cold that I picked up in the hospital) and still weak from the surgery. I made every effort to go in to see him as much as possible. I made sure to keep my germs as far away as possible from him and the people that cared for him but I could not go a day without seeing my baby.
The night of Tuesday February 22nd, we got a phone call telling us that Aiden’s heart rate had dropped and they were having a hard time trying to bring it back up. They were doing everything they could but felt that we needed to get to the hospital as soon as possible. We dropped everything we were doing (I was pumping at the time) and went to go see our baby boy, the whole time praying that they were able to revive him and everything would be okay by the time we got there. We got to the hospital about 25 minutes later and the doctor was waiting for us in the hallway of the NICU. She told us that they did everything they could do but that he was gone. I collapsed into my husband’s arms sobbing while they led me into the room to see my baby boy. My dad had gotten to the hospital before us and was standing at his bedside crying over his grandson. I was sat down in a rocking chair in the NICU room (with 3 other babies in incubators around me) and given my son, swaddled in a blanket and finally at peace. It was the first time I ever got to hold our sweet beautiful boy, and he was gone. I never got to see him open his eyes or kiss his cheeks…and I never got to say goodbye. This experience was the hardest thing that I have ever gone through and I am haunted by it every day. The pain is still there but it changes with time; sometimes it is a dull ache and sometimes it is a piercing constant reminder of what has been taken from us. My husband and I plan on starting counseling soon so that we can try to navigate our way through this time together. In the meantime I spend most of my time being sad and resentful on the inside. I am still learning how to be this person; the childless mother, who has more regrets than she can count. The “what ifs..?” only seem to accumulate and I’m left with no answers and an empty nursery. My brain realizes that it is not my fault and that I did nothing to bring this on myself but I wish my heart would understand that. I feel betrayed by my own body and lost without our son. Sorry for this ending up being so long but thank you so much for listening to our story.
Nikki (28) & hubby Blaine (40)
Mommy to Aiden Blaine - 15 oz./10.5 in. w/ IUGR
Born 2/12/11 @ 24+1 weeks due to Severe PE & HELLP
Lived 10 days, loved and missed more than words can say
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Re: New here - Due date today (very long)

Postby kerisue » Fri Jun 03, 2011 06:03 pm

by kerisue (623 Posts), Fri Jun 03, 2011 06:03 pm

Hi Nikki, your story is so very heartbreaking. I'm sorry Aiden didn't make it. Sounds like he fought as hard as he possibly could and you did too. I remember becoming hysterical- literally- when they told me I would have to deliver. Later I wanted to sue them for forcing me to deliver against my will (of course I didn't and don't plan to. I understand with my head that they had to do it). They also asked me if I just wanted to hold my daughter or have them try to resuscitate her. Like you, there was no question. I had to help my baby girl fight to live.
Like Aiden, my baby was also growth restricted and I have struggled with blaming myself and hating my body for not being able to nurture my baby adequately. I have also felt resentment toward others who seemingly have no problem conceiving and carrying baby after baby to term successfully. In addition to counseling, this forum is a good resource. I'm glad you finally found the courage to post. You might also want to get a copy of your medical records- that helped me better understand the doctors' decision making. Again, I'm so so sorry about Aiden. I wish more than anything that you were deliving today and that I had a happy healthy 8 mos. old.
Mama to Millie
born June 2010 @ 24 wks. gestation due to my severe PE and CHF
lived 25 days, loved and missed
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Re: New here - Due date today (very long)

Postby cmccaffrey » Fri Jun 03, 2011 09:32 pm

by cmccaffrey (458 Posts), Fri Jun 03, 2011 09:32 pm

Oh NIkki, your story sounds so very similar to mine, but my son was 30 weeks 3 days when he was born and he died 2.5 days later. So many of us understand your pain and I know that you will find good support from these miraculous ladies. I agree with Kerisue and that you should get a copy of your medical records. I would also go speak to a Maternal Fetal Specialist and see if he/she can run tests to see if you have any underlying disorders. I am so sorry for your aching heart... no one should have to experience such a terrible loss. I am so sorry that today is not the day you get meet your sweet baby, Aiden, for the first time and start a lifetime of memories together. Take very good care of yourself and try and do something special for yourself this weekend. Due dates, monthaversaries, anniversaries and holidays suck... just try to keep your mind on something positive! And remember we're here if you ever need to vent!
Christa (25) & J (26)
Mommy to:
Mason born 10.11.10 @ 30+3 wks due to Severe Pre-E. Only lived 2.5 days
Noah born 2.1.12 @ 38 weeks thanks to lots of doctors visits, LDA, Lovenox and no preeclampsia!

learn more about our story...
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Re: New here - Due date today (very long)

Postby » Fri Jun 03, 2011 10:55 pm

by (478 Posts), Fri Jun 03, 2011 10:55 pm

I am so sorry for the incredible pain you have endured. There is nothing worse then losing your baby. I am glad you posted and hope that this site will bring you comfort and understanding. I too lost my baby boy Benjamin. He was born emergency csection at 26 weeks 1lb 6oz. He was IUGR as well. Ben lived for 4 very scary horrible months in the NICU .It has been 9 and a half months now. It has been a long road for us. This site has been very helpful for my healing. I know you miss Aiden everyday and I understand all the emotions you have described. You are not alone.You will be in my thoughts.
Benjamin Spider Reeves born 4-28-2010( 1lb 6oz 26 weeks to severe pre-e and Iugr) we lost you after 4 long months in the NICU. You fought so hard,and were so brave.Our first baby .We miss you everyday and love you forever xo

Expecting ,dreaming, and hoping for our baby Girl sometime in January 2013
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Re: New here - Due date today (very long)

Postby m » Fri Jun 03, 2011 11:36 pm

by m (140 Posts), Fri Jun 03, 2011 11:36 pm

Nikki, I am so sorry for your loss, and I understand how you are feeling. I am glad that you posted your story - it can be very helpful. I know how hard it is to feel so sad all the time, but it will get better.
DS 2/5/09 - 2/13/09; severe PE at 28 weeks
DD March 2010; PIH, preterm labor at 36 weeks, 10 days NICU
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Re: New here - Due date today (very long)

Postby flori » Sat Jun 04, 2011 04:46 am

by flori (225 Posts), Sat Jun 04, 2011 04:46 am

Hi Nikki. Welcome and I'm sorry that you have to be here. I am so sorry about the loss of your son. There are not many people who can say they understand what you are going through, but many of us here can.

Your post brought me to tears. The NICU team also told my husband and me that Gracie was a fighter, a miracle. I became convinced that she would survive, despite all of the obstacles in her way. I also began making plans to base the rest of my life around NICU visits until we could take her home- I even stepped down from my management position at work the day after she was born because I never anticipated losing her. We lost her only hours later.

It is such a painful and terrible thing to have to go through. I still have anxiety when I think about the events leading up to Gracie's birth. Slowly I am learning to remember the short time she was here and use those happy memories to help me heal. I hope the same for you.
Flori, 30
Mommy to Gracie- born at 25 weeks 03/15/11, 11 inches, 1.1lbs, and absolutely beautiful. Became my sweet angel the next day.
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Re: New here - Due date today (very long)

Postby Aidensmommy212 » Sat Jun 04, 2011 01:39 pm

by Aidensmommy212 (14 Posts), Sat Jun 04, 2011 01:39 pm

Thank you so much for all of your kind words and advice! I feel like I know all of you personally from lurking for so long. I want you all to know that I am so sorry for your losses and I wish that none of us had to meet under these circumstances. You are a strong group of women and I know that I'm in good company. It is a strange thing to feel so connected to a group of people that you don't know because you share an awful thing that each other can relate to.

I'm at that point where it is difficult to be around friends who have babies (for obvious reasons) and yet also difficult to be around friends who don't because they have no way to relate at all. Most people still don't know what to say so they either try to avoid it or say the completely wrong things. I have been good about filtering myself because I know that things are said out of concern and love. It is still somewhat shocking that people do not realize there are some things that you do not say to someone who has lost a baby: "You can always have another baby", "Everything happens for a reason"...etc. Luckily, I have my husband, who warns people what not to say to me when they say it to him first (he looks out for my feelings as much as possible). Oh, and I know this might sound bad but if I have one more person tell me about their miscarriage I might scream. I do realize that they are just trying to relate to their own experience and that it is awful..but it is really not the same thing, nor does it make me feel any better. Ok, I think I'm done with that rant for now...

I do have an appointment on 6/21 with the MFM specialist that I saw while I was in the hospital. It is going to be very difficult to go anywhere near that hospital again, let alone on the same floor I stayed on for most of my 2.5 weeks but I know it's something I have to do. The appointment is called a "pre-conception consultation" but I made sure to tell them that we are not trying soon, we just need information for when we do decide to try again. I think that going over what happened to me and discussing future plans will help me find some kind of peace of mind on that end of things. If it turns out that I can't only see that doctor next time and that I'd have to see all 3 in the practice, including "Dr. Doom", I'm going to have to look elsewhere. If any of you have any suggestions of good questions to ask at that visit it would be very appreciated. Thanks so much again.
Nikki (28) & hubby Blaine (40)
Mommy to Aiden Blaine - 15 oz./10.5 in. w/ IUGR
Born 2/12/11 @ 24+1 weeks due to Severe PE & HELLP
Lived 10 days, loved and missed more than words can say
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Re: New here - Due date today (very long)

Postby sam10 » Sat Jun 04, 2011 07:24 pm

by sam10 (1448 Posts), Sat Jun 04, 2011 07:24 pm

Hello Nikki,

I just read your story and wanted to let you know how very sorry I am for your loss. Event though I can't offer much, I hope I can somehow help with a few words of mine.
Losing a baby under such circumstances is the most heartbreaking situation one can endure. It shapes you as a person, it leaves you empty handed, heartbroken,sometimes lonely, aching, and traumatized; but over time it can give you a new look at life and a sense for everything precious and deeper look into people's souls. This may not sound like anything that is worthwhile to you right now and I wish I could tell you otherwise. But it helped me to go on with life, perhaps it might help you too. Every hour, every moment, every day I am able go on with my life and not being completely lost, and even find some beauty has been worthwhile to me. As much as my baby was a fighter, as much I can fight for my life too, and I decided early on after losing my baby, that my life should be worthwhile. The pain will ease, it will become less acute, but it won't go away. A few have on these boards have referred to it as 'the new me".
My story reads very similar to yours, with a few details that are/were different, but overall it is almost the same. I still cry over my baby in heaven, I still miss him, I still try to find him everywhere (and I do, but in the most unexpected ways). I have made a lot of new friends, and have changed some of my old relationships with friends and family who I could not relate to anymore.
I started counseling very soon after my loss and it has helped me to deal with my situation. I wish you all the strength for you and your husband. Your precious baby Aiden will always be in my thoughts. (sending you hugs).
~Julija (42)
MC 3/2009 and 3/2011
H (1/1/2010-1/7/2010) - forever loved and missed; severe PE with Hellp; partial placental abruption, classical c-section at 25.6 weeks
M (Nov. 2012, born at 35.4 weeks) - severe PE

Our pain has been put into words, placed into empty cradles, to remember that all our babies lived, that they mattered and always will. - Field of Cradles
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Re: New here - Due date today (very long)

Postby uncskristy » Tue Jun 07, 2011 07:28 am

by uncskristy (171 Posts), Tue Jun 07, 2011 07:28 am

Nikki- I am very sorry for your loss. After losing Cooper, I can not imagine anything being more painful than losing a child.

I am glad that you have an appt to talk with your MFM. About a month after losing we met with one of our MFMs responsible for my care during our hospital stay and I remember leaving that appointment in so much more peace than what I entered. The Natural course of the conversasion did turn into what were to happen if we tried again so don't be surprised if you find yourself asking that question. We also met with him when we got to that point where we were ready to try again.

My husband and I have come to realize that we are different people after losing Cooper. Sadly we had gotten to a point where we did not appreciate things as much as we should. But we now take the time to enjoy life. I figured Cooper lost his life so mine was saved so I owe it to him to smile through the tears and pain and live it to the fullest.
Mommy of Three Boys- Davis 10/4/2007(No PE, overbaked at 40wks, 2 days),
Cooper 5/20/2010-5/21/2010 (born too early at 24wks, 2 days due to severe PE) and
Blaine 10/11/11 (35wks, 6 days, mild but quick moving PE)
Wife to Matthew since 6/11/2005
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Re: New here - Due date today (very long)

Postby rosemary » Tue Jun 07, 2011 06:25 pm

by rosemary (2360 Posts), Tue Jun 07, 2011 06:25 pm

Nikki - I am incredibly sorry for the loss of your sweet Aiden. Reading your story and what you have experienced is beyond heart breaking. While I am sorry that you found the website under sad circumstances, I am glad you posted here. I found the site shortly after losing my son at 20 weeks. The wonderful ladies here helped me sort out a lot of feelings and find ways to cope with new and uncomfortable situations. More than anything, I found a place where others understood what I had been through. While none of us can take away the pain of loss, just know that we are here to listen and offer support.

I wish you peace and healing.
Rosemary - 47 - Central, PA
Momma to Kayleigh 8/25/88 - 36 weeks
Elliott 8/29/04 - lost at 20 weeks due to severe PE/HELLP
Proud Grandma to Max Allen 10/19/10.
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