Just an FYI - this is going to be long! I haven't ever written my story before, and I feel the need to get it all out there, so it will be lengthy, I'm sure. My journey to motherhood was a long one, filled with a rollercoaster of emotions. As a Type 1 diabetic for 16 years, I had always taken decent care of myself, but when my husband and I decided to try to conceive, I decided to go on an insulin pump and REALLY get myself healthy and get my diabetes under tight control. Well, I did that...but after 2 and a half years of trying...still no baby. We went to a fertility specialist, and I had all the typical tests done (none of which are very pleasant), and my ovarian reserve was found to be low (I was 32 at the time), but nothing indicated that we should be having the problems we were having for so long. I did several rounds of IUI and IVF, and suffered many heartbreaks, but ultimately we were successful. We were so excited! I wish I could say that my pregnancy was smooth sailing, but I suffered major morning sickness (which is completely a misleading name...I had it all day every day!), acid reflux and spotting. You know, just a few things to keep things interesting! I tested my blood sugar like a maniac; almost 15 times a day. I wanted to make absolutely sure that my diabetes wouldn't cause any negative consequences. Around the 5 month mark, they measured my belly and said it was measuring big. The baby was still fine, but I had excess amniotic fluid. Not to the point of being diagnosed with polyhydramnios, but enough to make my belly bigger than normal and make me pretty uncomfortable. Around the 5 and a half month mark, I started noticing that my feet were getting swollen. Everyone said it was no big deal, though, because that's a normal part of pregnancy. Slowly, the swelling was creeping up my feet into my ankles and calves. I was already being seen by a high-risk pregnancy specialist because of my Type 1 diabetes, so they were constantly checking my blood pressure, but I was always fine. I should mention here that even though I am a diabetic, I have never had blood pressure or heart problems, and I have always participated in athletics and kept very fit with never a single sign of heart trouble. Soon, the swelling was up over my knees and that's when my blood pressure starting going up and they noticed I was spilling protein in my urine. Nothing was too serious (they said it was mild preeclampsia), but they did put me on modified bed rest and monitored me very closely for any signs of the preeclampsia worsening. Well, it did get worse, so they shot me up with steroids at week 33 to help the baby's lungs develop in case we had to deliver early (and anyone who is familiar with diabetes knows that steroids and diabetes do NOT mix), but it had to be done. I had a blood pressure monitor at home by this point, and was checking myself several times a day because I was worried. The day I saw that puppy hit 170 over 90, I called my doctor and they said to pack a bag and come to the hospital because I'd likely be there from there on out. They monitored me for 2 days and nothing got worse. It was this fine line between keeping the baby in the best place he could be for growth and development (my uterus), and making sure I wasn't in danger. They were almost ready to discharge me to go home on bed rest again, but then I got the preeclampsia symptom of blurry vision with floaters, so they induced me (and gave me magnesium for the preeclampsia, which I did NOT tolerate well). I was at 34 weeks by this point. I did not want a c-section, and the doctors were ok with me trying to have a vaginal birth, as long as the baby AND me were not in any danger. Baby and I put in a valiant effort, but after many hours, the baby's heart monitor showed his heart rate was dipping after each contraction, so it was time for a c-section. The magnesium made me completely loopy and I was only vaguely 'with it' through much of the delivery. I was also puking into a little bed pan next to me throughout the c-section as well. To this day, I only remember bits and pieces of the delivery. I do remember them bringing my baby to me for just a second before they whisked him off to the NICU. I lost the whole next day after delivery because they put me back on the magnesium and I was puking and barely lucid. I didn't even get to go see my baby that day. Luckily my husband took lots of pictures. My baby had low blood sugar and was on a ventilator for only 12 hours, but otherwise he was in perfect health. THANK GOD! Oh, and he weighed 7 pounds 2 oz! At 34 weeks! And I even took GREAT care of my diabetes throughout my pregnancy, but still ended up with a big baby. I can't imagine what he would've weighed had he gone to term. Anyway, 2 days after delivery, I was still massively swollen in my legs, all the way up to the tops of my thighs. I had major pitting edema. My left arm was also very swollen because an IV had infiltrated it. My blood pressure still wasn't great, but wasn't too horrible either, so the doctors just said the swelling would go down 'eventually', and I just had to wait it out. I shuffled to the NICU to see my baby and was in pretty good spirits since he seemed so healthy despite being born early. But the very next day, I had a lot of trouble walking to the NICU and just felt tired and out of breath in general. But it was so hard to know what was 'normal' after having preeclampsia and being so swollen that I just chalked it up to that. That night, though, I knew something was wrong. I could NOT lay down flat in my hospital bed. I felt like I was drowning. It was such a strange feeling. My heart would race, and I thought to myself, "Am I having an anxiety attack?". I had never had issues with anxiety before, so I wasn't sure what that felt like, but I thought that might be what I was feeling. I also kept constantly checking my blood sugar because I thought, "Well, maybe this is a new symptom of low blood sugar for me? Who knows! Everything about my body is changing!" But my blood sugar was fine. I tried laying down again and felt the same drowning sensation and fast-beating heart and felt like I was going to pass out, so I hit the button for the nurse and when she came in I said, "Something is not right and I can't explain it but I need help!" My blood pressure was being monitored constantly and at this point, they checked it and it was 175 over 112. And my O2 saturation was low as well. They gave me a blood pressure lowering medicine through my IV and when I said I felt like I couldn't lay down, they said they were going to schedule a chest x-ray to look at my lungs. The best way I could describe the feeling when I tried to lay flat was like I had restless leg syndrome...but in my upper body. Like I just HAD to sit up and couldn't just lay down peacefully. Well, the chest x-ray showed pulmonary edema, so they then scheduled an echocardiogram. It showed a slightly leaky valve as well as an EF of 40%. They brought in a cardiologist to give me these results, and it's very startling to hear you have slight heart failure after just giving birth! The cardiologist explained PPCM and said that a lot of women fully recover, but some don't, and that my EF really wasn't as bad as it could have been. My husband and I were trying to take this all in, while also trying to be there for our baby who was still in the NICU (he spent 2 weeks there, but only due to feeding issues. He was just too young to figure out how to feed from a bottle. And yes, a bottle is what he had to have because I was not able to breastfeed. Not sure if it was the stress of everything or what, but my milk never came in). I was put on IV lasix as well as carvedilol and lisinopril (and a whole host of other drugs those first few days after delivery that I've since forgotten their names and even uses. It was all such a blur). My diabetes was hard to control those first few days after delivery because of hormone changes, new medications, little to no activity, etc., but we were focusing more on getting my heart/blood pressure situation under control first. After everything seemed to be under control through medication (and after a brief scare with a blood clot in my left arm -- GEESH!), I was discharged. While I was glad to be healthy enough to go home, it was bittersweet because my son was still in the NICU. I found out that babies of Type 1 diabetic mothers are sometimes called 'lazy babies' because they take longer to figure out the whole latching and sucking thing, and will sometimes start to suck, but then get tired easily and just stop and fall asleep and don't get enough to eat. So, the NICU was hesitant to release him until they were sure he could eat enough to keep his weight up. Once they did release him, it was the happiest moment of my life. I was still scared of what this PPCM diagnosis meant for me, but I was beyond relieved that my son was coming home. After a few months and several follow-up appointments with my cardiologist, a cardiac MRI revealed no more leaky valve and an EF of 60%!! Things are looking great, although I am still on a fairly high dose of carvedilol and lisinopril, so it's evident my heart still needs that help. And since I used to be a runner before I got pregnant, I wanted to do a treadmill stress test to see how much exercise I can handle now, and the results of that came back great! (although in all honesty, I still haven't taken up running again and it's been over 9 months since my son was born. I'm just too scared still). My cardiologist has basically discouraged any future pregnancies, and I really don't think I've even let that thought sink in yet, because I am so busy being a mom to my wonderful son, whom I am so thankful to be able to be here for!
My Details
- Date Diagnosed: 28/07/2013
- Child: 1
- Initial EF: 40%
- Current EF: 60%
Story By Deb Pogemiller