My story so far....long version:My husband I got pregnant with our first in 2007 and
My story so far....long version:
My husband I got pregnant with our first in 2007 and the baby was due 01/31/08. I ate very healthy cause I couldn't stomach sugar or fries. My pregnancy included regular naps and some morning sickness. We found out we were having a girl and things were going fine.
At 27 weeks my ankles swelled and raising them was a temporary fix. I went for my monthly dr appt and was excited because after that appt I would start going every other week. I got on the scale and in one month I had gained over 17 pounds! This was not how my weight had been going by no means. I was gaining 2-4 previously per month. I was appalled at the number and my cankles so I asked the nurse if this was normal. She said anything over 10 pounds was excessive. I pushed again when the OB came in and told her about the swelling and asked what I was not doing right. She said I should (say it with me girls) DRINK MORE WATER. I hate it when they say that! Then right before I set up my next appt the nurse tells me there is protein in my urine and they want me back in 1 week. I knew something was wrong because I was coming back sooner than every other week. I didn't make it to that next appt. Six days later I woke up and my face had swollen and it was hard to see out of my eyes. I was actually mad because I had followed the dr's orders and drank water like a crazy person all week so I called the on call dr and told her my symptoms and what happened in my last appointment and she asked what my blood pressure was. This was the first time that phrase had ever been mentoined so I said I don't know. She said to go to the drug store and check it and call back so I asked what SHOULD it be. She said for a pregnant woman the bottom number should not be over 90.
So I head to CVS and I am thinking 87 or 89 and the machine comes back with 116 on the bottom! So I cry and go to the hosptial and get admitted at 28 weeks and magnesium was started at some point.
My baby is fine at this point and I am told that we are going to try to get me 10 more weeks on bedrest. Later that night we are told we are having a baby in the next week. The next morning I saw the perinatal specialist and daughter is doing just fine so she is not in jeopardy but I am not doing as well and they want to give me the steriod series to develop her lungs. I get the first one at 9am that morning and they will give me the second one 12 hours later and then we will deliver the next day. I couldn't handle light, noise, and it took a long time for me to process questions that were asked to me by family and friends.
Then my kidneys shut down later that day and we have to save mom now and we are having a baby today. So 7 months into the pregnancy my husband and I are prepped for an emergency csection and parenthood. My experience was pain free in the OR but the most traumatic thing I have ever experienced in my life at that moment. So on 11-12-07 at 8:12pm I got to hear our daughter cry and see her as she was wheeled by at 2 pounds 1 ounce and the tinyest thing I had ever seen. But I was not out of the woods by any means. My kidneys came back in surgery but my blood pressure was still outraggeous. I got as high as 176/128 as far as I know. I was in the hospital 9 days total. I had blood pressure spike attacks and no medicine fixed it on day 3 and 4 post partum and then on day 4-6 postpartum I sweated the bed every night. I think partly to get rid of all the excess water and partly from the blood pressure problems. About day 5 post partum they started getting a handle on my blood pressure with 300 mg twice a day of labeterol. All the while trying to breast feed for my new baby girl in another part of the hospital. I was on labeterol for at least 6 weeks total.
If you want to skip to the bottom I have more on me about what we have discovered since November.
Caley Brianna Joyce started in the NICU that Monday night (11-12-08). After 2 minutes of breathing on her own she was started on a ventilator. Our first hurdle was a heart murmur about 4 days old. They wanted to use medicine to close it up and they did that over the weekend. We found out around the following Monday that they thought it had worked and were going to monitor her. My husband was so scared around her because she was so little and he couldn't help her at all so he would bring me pictures several times a day since it was harder for me to get to the NICU. She was so little that my husbands wedding ring fit all the way up her arm to her shoulder and mine fit through 4 of her fingers. On Thanksgiving something was wrong. She was showing signs of a sickness so they did blood work and could not find a match but were pretty sure it was bacteria so they stopped her feedings and paid close attention and started several antibiotics. I was terrified and told my husband who had a cold/allergy and was not going into the NICU. At some point NEC was mentoined as the cause but as long as no air was found in her bowels they were hopeful. Friday we were told the heart murmur was back because of her illness and Saturday she was worse and that night the doctor suggested exploratory surgery. So Sunday morning at like 2am we were told she might not make it due to having to remove too much of her intestine to survive. I prepared myself for them to tell me an hour later. The surgeon came back saying she made it and they took half of her large intestine and wanted to go back in 2 days later for some areas that were either going to die or improve from the antibiotics. By the time the surgery was over though she was showing signs of renal failure and she was too small to be a canadite for dialysis. It was touch and go every hour. My husband and I crashed Sunday morning and went back to the NICU for most of Sunday and then tried to go to bed around 2am Monday morning. I called one more time to give me piece of mind that there was no change and went to bed. 15 minutes later the nurse called and said we needed to get to the NICU Now! I asked why and she just repeated the first statement. Once we were there we were told that Caley had coded and they were able to get her back. They said her potassium levels were too high and unless she started peeing it would be a matter of time. She coded 3 more times and passed away at 8:10am on 11-26-07 and after she died was the first time my husband and I got to hold our daughter. She was buried on 12-2-07 at 2pm, the date and time of her baby shower. My only comfort is something that was said at her funeral, that she was as pure as Jesus because she had never sinned and she would be waiting on me to come to her when it was my time.
So 9 weeks postpartum we ran a bunch of labs to see what we could find. I failed a TPAI test with high levels which means I clot too much and failed an MTHFR test which means I have mutated dna strands that could be adversly affected during pregnancy such as high homocystine levels. I have also had positional dizzyness for 5 months postpartum and had an MRI today to rule out stroke during my hosptial stay or the week before. If that is not the problem it has been explained as vertigo that can be fixed with physical therapy of some sort.
They have also said that the next pregnancy will hold folate for the homocystine at high dosages which I was told to start at least a year before trying again and when I am pregnant there will be baby asprin and some sort of heprin type drug which would supposedly make things much different. If I get in a car reck that is major and if the baby comes early again they can not do a local anesthesia and I will be completely under for the birth. We are still in the research stage and the grieving stage and want to know more before we feel sure about trying again. We are very scared of experiencing this twice and also know that for some reason the mom has to be a bigger advocate for her health than the dr who is not as detailed as we all would have hoped for our last pregnancy.
If ya'll want to reach me I have an old email acct email@example.com
I don't check it all the time but know how hard it is to connect until you find out someone has the same symptoms or experience.
I will probably post more than one story since our stories are ongoing and long, but I noticed alot of people are looking for answers/help.
I had severe preeclampsia at 28 weeks that took a perfect pregnancy to life threatening in 6 whole days. My daughter Caley Brianna Joyce was born at 2 pounds 1 ounce, lived for 2 weeks and died of NEC which caused septisemia which cause renal failure which caused her potasium levels to get too high and cardiac arrest.
I was told that she was in the 5% of not surviving.
As for me we are trying to prove a blood clotting disorder. I had a TPAI test and failed and an MTHFR test and failed. If you are still preganant while reading this get your homocystine level checked to know that is not a factor. I would suggest any mother who wants to be pregnant in the future to dig deeper. It could have been something similar to mine or just bad healthcare but find out. Post those stories. Alot of us are lost but the pieces we all find out should be posted so we can figure this out. 1 in 12 pregnancies deliver because of this condition. That means that the other 11 could have it too but deliver for a different reason. Why are doctors not taking this more seriously? I am not saying you have to find the cause today but treat us moms who want to stay moms.
Ethan will be turning 3 at the end of this month (October). The month of October always brings up some scary memories and emotions for me... I never thought I would have a difficult pregnancy or labor. After all...