After seeming to talk us into the shunt surgery in the ER, our neurosurgeon seemed to spend our clinic visit talking us out of it. While she seems to agree that the surgery is basically inevitable, there is still a slim slim chance the hydrocephalus will arrest, and since she’s not having severe symptoms at this time, we have a little time to wait. In the meantime, we’re probably going to start her on Zantac and see if that helps the vomiting.
I’m glad this means no surgery this week, though I’m pretty sure she will need the shunt at some point. Guess we’ll be staying in style when that happens, because the new infant and toddler unit at our children’s hospital will be open by then.
I also realize I haven’t updated about MY health issues in a while. Based on my slow recovery and echo-cardiograms, my cardiologist had me do a contrasted cardiac MRI. It was kind of crazy to actually feel the contrast get warm in my chest every time the MRI machine was on, and I now totally see why claustrophobic people totally wig out in those things. Personally, I pretended I was an astronaut about to be blasted into space. Anyway, the upshot is, it looks increasingly like I have a congenital heart defect called left ventricle non-compaction syndrome, which basically means the tissue in my left ventricle didn’t form correctly, which is why it’s weak and has such a “poor squeeze.” The strain and stress of the pregnancy on my body is what finally made my condition severe enough to notice. I now feel vindicated and want to go back to every PE teacher I ever had and explain that my poor performance in everything endurance related is actually the fault of my heart.
The MRI also showed that my ejection fraction (a measure of how well the heart pumps blood into the body) has improved from 15% to about 30% (normal is still 50% or better). I’m still doing well on my ever-increasing cocktail of meds, and I think my doctor will be adding a third medicine (I’m already on a beta blocker and an ace inhibitor) this week, and I hope the transition goes well.
Anyway, that’s what’s going on with Claire and me health-wise. Thank you again for all of your support, thoughts, and prayers.
Some folks may be wondering, since my last post over a week and a half ago was OMG ONE DAY TIL BABIES LET’S FINISH THE NURSERY, whether or not I did in fact have those babies.
And what a crazy story it is.
Things started out as planned– we didn’t sleep at all the night before from excitement, and we showed up at the hospital at 7:00 am on Wednesday, March 28 (exactly one month before my 40 week due date) for a C-section that had been moved up 5 days because I suddenly had an elevated blood pressure and had started retaining fluid. I was really nervous about the surgery, but despite a little trouble getting the spinal/epidural combo in place (apparently folks with scoliosis and an extra vertebra are a bit challenging for anesthesiologists), the whole operation went very smoothly. It’s super surreal to be lying on a table, numb from the waist down, knowing you’re being cut open and having babies pulled out, but feeling nothing but pressure and tugs and then suddenly hearing cries. I’m pretty sure I was saying “I’m afraid I’m going to feel it!” to the anesthesiologist who was standing next to me as I was already being cut open.
It turns out my girls, who had been in “bunk beds” or in the transverse position for my entire pregnancy, had turned breech somewhere between my last appointment and the surgery– so I’d have definitely needed a C-section even without my blood pressure issue or Claire having spina bifida. Jon joked afterward that there are about 5 ways I could have died in childbirth this week if not for modern medicine– breech twins are one of them. Jokes aside, there is no one more supportive and awesome than my husband, who was right by my side for the whole surgery. The surgical team kept telling him when to pull out his camera for a good photo op, but he mostly focused on supporting me and keeping me calm. He did have the anesthesiologist give me some “goofy juice” at the end when I started to freak out a bit that I might be feeling more than just pressure (pretty sure that was mental), but overall, he kept me relaxed.
After both girls were pulled out, Etta weighing 6.2 lbs. and Claire weighing 6 lbs. (I am SO FREAKING PROUD of those weights for 35 weeker twins, I must say), Jon went with the babies to the resuscitation area, which sounds scary, but doesn’t necessarily mean the babies are getting like, CPR or anything. They were checked out by a team of neonatologists and pediatricians, and there was a transport team standing by ready to take Claire from the university hospital where I was delivering to the nearby Children’s Hospital (where my husband works), where she would be having surgery to repair the opening on her spine caused by her spina bifida.
It turned out that Claire’s spinal defect was both higher and larger than we initially hoped. I got to see my baby girl in a plastic transport box for about 5 minutes in recovery before she was whisked away by the transport team. I’m pretty sure the “goofy juice” is what helped me not completely freak out over not getting to hold one of my babies, but we had also prepared ourselves for the fact that this is what would happen on delivery day, knowing it would be happening since week 20 of the pregnancy. I was also very thankful to have met and consulted with the team of doctors who would be taking care of her, so I knew she was in the very best of hands.
After recovery, Etta and I were moved to the peri-partum ward, and she was allowed to share a room with me. My blood pressure and heart rate were slow to go down, and labs revealed my blood counts were very low, so on Thursday I received a blood transfusion. Everyone who came in the room and saw me afterward remarked on how much better I looked, and the color in my face, even though I was about the same shade as the beige hospital blanket that covered me. I guess I was white as the sheets before?
On Friday, Claire had her surgery, a five hour process involving neuro- and plastic surgeons to cover the 4 cm. area where you could literally see her spine. I wished so desperately that I could be there for her, but was still not in shape to be discharged from the hospital, so a social worker set up a video-conference and I got to video chat with her before the operation. She opened her eyes when she heard my voice, which made me feel so much better that she still knew her mama loved her. She came through the surgery great, and continues to recover in the NICU at Children’s. She seems to move her legs of her own accord and also to respond to stimuli, which are great signs that she may not have disability in her legs. As with everything, though, we will just have to wait and see. She may also have disability in her bladder and bowel functions, but since no babies have bladder and bowel control at this point, we won’t know until she’s older if this is the case. We certainly hope it isn’t.
On Saturday, there was talk of discharging me from the hospital as I was doing much better, but I was still feeling very very weak and not very able to get out of bed, and when my doctor suggested keeping me another day, I said I thought that was a good idea. I needed the time to continue to recuperate.
By early Sunday morning, I was feeling well enough to get out of bed and walk unassisted the 5 steps to the bathroom, as Jon was holding Etta. I remember feeling so proud as I stood up and walked unassisted, thinking this was finally the milestone I needed to get to go home. As I walked back to the bed, I felt myself getting shorter and shorter of breath. I told Jon I was having trouble breathing, and he called for the nurse. It just got worse and worse, as I struggled for breath in short gasps, and a crowd of nurses gathered around. People were telling me to take a deep breath, but short gasps were all I could manage. I began to hear crackling in my lungs (Jon later explained that this was flash pulmonary edema), and I became more and more panicked. I knew from the way I felt and the look on Jon’s face that I was crashing.
The Rapid Response team arrived and soon I was being prodded and various breathing masks were being shoved onto my face, which only increased my feeling of panic. I know enough from being raised by medical professionals and married to an emergency physician that I needed to be intubated. I was looking at Jon begging him with my eyes to get someone to sedate and intubate me so I wouldn’t have to panic and struggle to breathe any more. From the look on his face, I could tell if he’d had a cart nearby, he would have done it himself. I truly believed I was dying, lying in that bed, surrounded by people bustling around to save me, with my husband watching and my baby girl lying next to me in a bassinet.
And then I don’t remember anything.
My next memory is vague, like a dream, where you know there is something you MUST do, and in this dream, what I had to do was pull something out of my mouth. So I just kept pulling.
It was Monday morning, and I had extubated myself. I was in the ICU, where I had spent about 24 hours on a ventilator.
After consults with cardiologists and pulmonologists and internal medicine specialists and more doctors than I can count, it seems I have developed peri-partum cardiomyopathy, which was causing congestive heart failure. My terribly lay understanding is that possibly due to the stress of the pregnancy on my body, I either developed or finally exhibited a pre-existing weakness in the muscle of my heart, specifically in the last chamber (left ventricle) that sends blood out into the body. The ability of this chamber to pump out blood effectively is measured in an “ejection fraction.” Most people’s is 50% or better, and mine was 15%.
Putting me on the ventilator helped them pump fluid out of my body to take the load off my heart and lungs. They removed 7 liters of fluid from my body in my 24 hours in the ICU, and continued to take more off through diuretics and fluid restrictions after they got me out of the unit and back in the peri-partum ward.
Tuesday through Thursday were spent trying to fine-tune the cocktail of medicines I am now on to control my heart rate and blood pressure and allow my heart to strengthen and heal. Every day they tweaked the meds a bit, and every day I worked harder to get out of bed and walk and move. By Wednesday night, I finally was able to make half a lap around the ward, pushing Etta in a bassinet, Jon beside me to steady me, with nurses cheering– even those who hadn’t cared for me had heard about the girl who was seemingly ready to go home and had suddenly crashed and wound up in the ICU on a vent, so they were proud to see me looking better.
At first, the medicines made me feel worse, which my cardiologist told me would happen. I’d get my meds, and then for 4 hours afterward, feel hot flashes and jitters and general exhaustion, only able to sweat and sleep. But every day that got a little better. By Thursday, Jon and me, and Etta, if I may speak for her, were just DONE being in the hospital. Convinced that I would be compliant with my meds, diligent in home blood pressure checks, and sure to come back for follow-up treatment, I was finally discharged. I have never been so glad to breathe fresh air as when baby Etta and I were wheeled out to the curb in front of the hospital on that beautiful spring day when we finally got to go home. I’m feeling better and better since then. My heart condition may never be fully cured, but it can get a LOT better, and I have high hopes of being one of the successful cases. We will not be able to have any future pregnancies, however, because it would literally mean risking my life.
Another loss that I feel very deeply is the loss of the ability to breastfeed the babies. I had really hoped to be able to nurse them, and had been working on nursing Etta and pumping and building up my supply while in the hospital, however, after the whole almost-dying thing, my doctors convinced me that breastfeeding is a major physical strain on my body, and I needed to be conserving my physical resources to give my heart the best chance to heal, so that I could become strong enough to care for my girls. I have cried many tears over this loss, but I know that we made the right choice for our family. They need my beating heart a lot more than they need breast milk.
We’re still missing 1/4 of our family, with Claire still in the NICU, and we are anxious to get her home. I’m still pretty weak, though stronger every day, and my one outing a day is to go visit her. Blessedly, Children’s has a special “twin rule” that lets us bring Etta with us to visit her sister, and it’s super special just to have the four of us together for a little bit each day– giving us a taste of how great it will be to finally have all of us home. We don’t have a specific date that she’ll be discharged, but we hope it could be soon if she keeps meeting the goals her doctors set for her. Every day that I’m wheeled out of that NICU with only one baby feels incomplete.
Overall, though, I am so very thankful. I’m glad I was in the hospital where I could quickly get the care I needed when I crashed. I’m glad Claire has such awesome people taking care of her, and glad we have awesome families who would come and take care of her and Jon and Etta and me when we needed them. I’m thankful for two beautiful baby girls. I’m thankful to be alive.