Melissa Hicks

 Peripartum Cardiomyopathy Support Network

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I was 36 weeks pregnant and in labor, my OB was out of town and the OB that was taking his place let me lay in labor for a week with a high BP. I kept going to the hospital and he kept sending me home. Well on Thursday night I fell and the OB on call insisted I come to the hospital to be checked. I was fine and so was baby but she said let me recheck you in the morning, see this is not the same one who left me in labor. The next morning I went to the office and she checked me and told me my Bp is high and I have protein in my urine but it was only a one. My Ob will be back in town on Monday and come back then and see him.

I went in on Monday and he checked me and said you have developed preclamsia and toxemia while I was gone. See he checked me right before he left and things were fine. He said your BP is to high we have to deliver now so it was already 1:00 and he was not the one on call but it would be after 5:00 by the time I was hospitalized and stabilized and everyone was ready so he agreed to deliver anyways, after all the one on call was the one who let me lay in labor. I had to be started on a Mag drip for my BP because I was in danger of having a stroke and he wanted me on that for at least a couple hours before he delivered. So sometime after 6:30 on July 12th we had a baby girl with no more father complications.

I was left on the Mag drip till the next day and later moved to a postpartum room. I was told then it would be at least Friday before I went home, but on Thursday the OB who left me in labor came in and asked are you ready to go home. How stupid I said yes and he sent me. I should have waited till Friday for my OB. When he released me my feet were so swollen and I asked him what do I do about this? He said kick em up. Oh and my Bp was up the night before.

From the time I went home till Sunday morning I struggled to breath, I couldn’t even sleep. On Sunday morning I had had enough after sleeping sitting up in a computer chair with my head laid on her changing table. So I called my OB, luckily he was on call and he told me to go to the ER.

While there they found that I was in Congestive Heart Failure and that I have PeriPartum Cardiomyopathy. I was admitted for an expected 3 days which turned into 5 because I wasn’t responding to the meds. On the third day the Cardio came in and told me Iif I didn’t respond by the morning they were going to stick a needle in my heart and draw out some fluid and then send me to Duke for a heart transplant, so I made up my mind I didn’t want that so I got to some hard praying. By the next day I was clear and was on the way to recovery and the next day I went home.

When my baby was about 4 ½ months old we noticed some strange straining and screaming which we thought was constipation. We put up with it for a week because she was still having bowel movements and they were not firm. After a week it got so bad that we went to the ER one night and was told shes constipated. Then we seen her pe da few days later who said the milk he put her on is causing the problem and gave her suppositories. He had her on Nutramigen because he thought she ha dreflux which we now know was seizure problems and not reflux. She is on Carnation good Start and no reflux med and is doing fine with her stomach. There were warning signs before this for seizures which her ped ignored and gave her the 2 month and 4 month shots and now wants to give her the 6 month shots. Not Happening. I was at my family doctor’s office one day with her when she had one and he immediately said that’s a seizure. He ordered a work up Cat scan and EEG immediately and she’s not even his patient. On the CAT Scan it was thought that it was hydrocepalus so her ped put her on Femabarbitol and made an appointment with a close neuro in 10 weeks. When my doc heard this he said she can’t wait htat long so he called to Baptist and they said have her down here tomorrow. It turned out not to be hydrocephalus. So the neuro surgeon made an appointment with the neuro down there that was only two weeks away.

1/4 We went back to Baptist to see the Neurologist which told me her brain didn't develope completely and he is running test to find out exactly why. He thinks he can determine the reason including a possibility of peri partum cardimyopathy causing it. He is going to schedule her for a MRi and EEG which she has to be put to sleep for. I am so scared of her being put to sleep.

He also put her on Lamictal and is going to take her off of the Femabarbitol, he said she is a little behind but he thinks the most if not all of it is the medicine shes on. He said she is to drugged up and this is the wrong medicine for infentile seizures. However since she did slow down on the seizures while on the femabarb he is not going to take it away until she has a high enough level on the new med.

He also said she looks good as far as her developement goes and thats a good sign.

1/5 things have went down hill she is having about 10 hard seizures every 24 hours. Her ped done a med level on her femabarb and it is to high. It is 68 and should not be over 40. Now we have to get the level down by just not giving the femabarb, it is believed this is what is causing the seizures right now.

1/6 Femabarb level is down to 36 today but she is still seizing. Her ped is going to call her neuro in Winston-Salem. The neuro said put her in the hosp. and get them stopped now. We went to the hosp. and she was started on Dylantin by an IV when her level is between 10 and 20 we can go home with yet a new med. 5 hours later the level is 14.5 and we get to go home she will be on the Dylantin until the Lamictal takes over in about 1 month. The femabarb is no longer working so she is being weaned off of it and will be off by 1/14.

1/7 Had 5 seizures through the nite.

1/8 She has only had 1 seizure within 24 hours but the ped said her dylantin level is to low and if they pick up he will put her back in the hosp. Her level is down to 4.

1/10 Her level is up to 5.3 but she is having about 3 seizures every 24 hours. I hope it doesn't pick up anymore. The doc has increased the dylantin twice now and hopes it takes over soon.

It is so hard to take care of her, she doesn't sit, roll, play or even hold her head up but she is getting more active since she is being weaned off of the femabarb. She pulled my hair on Sunday for the first time since she has been on that medicine.

It is a good thing Ihealed alot before she got sick even now it is hard and my emotions are a rollercoaster. So scared, This is my secound and last baby. Sometimes i just hold her and cry, what else can you do?

Rose had her bloodwork done and the level is 13.3 which is in therapeudic range, however she is still having seizures,so we called her ped the following day she is still having 7 a day. Her ped called her neuro who put her on a new medicine until Monday. She is now taking .15 ml twice a day of Lorazepam as well as her Lamictal and her dylantin. She goes for more bloodwork on Monday and after the results are in her ped is to call her neuro and let him know how many seizures she is having now. This is not a medicine she can stay on so I don't know what his plan is.

The Lorazepam is not reccommended for infants but there have been other cases where it was given to infants on a short term basis. The one thing we have noticed is that she only had 2 seizures today but they were 45 minutes after I gave her the new medicine both times, so I don't know if that is a good thing or not. All she does is sleep on this medicine, she doesn't even wake for feedings, but they told us that would happen. The hope is to controll them till the Lamictal takes over. She is so drugged that she is limp and I don't like that , that's scary.

She goes for her MRI and EEG on 1/26