Silver Linings

Our home for 3 days after Nora's birth

I have struggled to write this post for almost 2 months now.  I wasn't sure if I should, if I wanted to re-live it, if anyone really wanted to hear about it or if I wanted to share it with the world. But two things made the decision for me: I need to get it down on paper, for myself, as a sort of cathartic process; and the experience itself made me realize - in the end - just how incredibly lucky and blessed we are. And I need to be reminded of that.

So here is the story behind the story of Nora's birth, the hardest & scariest week of my life.

When I was pregnant, during an ultrasound with the perinatologist that was to check for something unrelated, they noticed that the right ventricle in her brain was enlarged. That was at about 24 weeks, and they decided to monitor me to determine if there was a problem.  Throughout my pregnancy, I was at the perinatologist every few weeks for an ultrasound so they could check it and see if there were any changes. Luckily, there were not: the measurement stayed on the cusp of abnormal but never got any bigger, so both the doctor and Omar were able to convince me that everything was ok.  The specialist assured me that this was not uncommon and once she was born they would do an ultrasound of her brain to verify, but that chances were that everything was just fine.  When I pressed him as to what it would mean if there was a problem, he used scary words like "development delays" and "mental retardation" which terrified me. But since everything continued to check out ok, I put it to the back of my mind.

The day after Nora was born, they took her to do the ultrasound of her brain, and I didn't really think much of it.  Our perinatologist is one of the best in the state, and he had assured me that it was just a routine check they did but not to worry. So when we got the call in the hospital at 9pm that night from the doctor that the results were NOT normal, it came as a huge shock. They said they wanted to re-do the ultrasound the next morning to re-check. They said the words hydrocephalus....if you don't know what that is, don't google it. Because it is really really scary.

The next morning they redid the ultrasound and the results were the same, they confirmed a diagnosis of communicating hydrocephalus. The treatment for this condition is to do surgery to put a stint into the brain to drain off the extra fluid. Brain surgery. They were talking about doing brain surgery on my 2 day old baby. The pediatrician referred us to the top neurosurgeon in the state and put in the transfer request to Scottish Rite.

At that point, things were happening so quickly. I had had a c-section less than 48 hours prior and was still incredibly sore and immobile. They wanted to transfer her to Scottish Rite immediately, but I wasn't supposed to be discharged from the hospital for another 72 hours.  I could barely walk, but I was not ok with them taking my baby without me. After several frantic phone calls, we got my OB to convince the hospital to discharge me so that I could go with her.

I can't accurately describe the feeling of watching your brand new baby be bundled up into a portable incubator, wires all over her, to be transported to Scottish Rite.  When they wheeled me out into the hall and I saw her in there, I lost it. It made it all slam home in an instant, and my heart felt like it had been jolted with electricity as the enormity and seriousness of the situation suddenly became crystal clear. I'm not normally a crier, but this was upsetting enough that even the nurse that was pushing my wheelchair was crying.

So they loaded Nora and me into the Scottish Rite ambulance and off we went.

The next 3 days were a blur.  Nora was admitted to the neonatal surgical NICU.  Because Scottish Rite is a children's hospital, there was nowhere for me to be admitted to even though I was still supposed to be in the hospital due to my surgery. The best they could do was provide a recliner next to her bed in the NICU.  At night, we could sign up for a lottery to hopefully get a sleeping room for me, which was basically a padded bench inside a closet that I could have access to from 9pm - 7am.  Only I was allowed to stay there, not Omar.  Because I was breastfeeding and she had to eat every 2 hours, there was not the option of me going home.  So I spent the next 3 days sitting at her bedside, as she was hooked up to a multitude of monitors, waiting on a neurosurgeon to determine what we needed to do.

The neurosurgeon did perform an ultrasound in the first 24 hours we were there to simply confirm what they had seen at Piedmont.  And he had really encouraging news: in his opinion, it did NOT look like hydrocephalus.  But the only way to be sure was to do an MRI of her brain.  Because hydrocephalus is not a life threatening condition (by that, I mean it was not critical that we have the diagnostics done immediately, as the condition would not get any worse if it took a few days to do the tests) we were not a priority as far as timing. And I totally got that, there were babies in there with very critical conditions.  So when the MRI kept getting pushed back, I understood on an intellectual level, but it was also really hard. We wanted answers. I wanted desperately to go home. All the visions of how our first days after birth were supposed to go, how our first days at home as a new family, were shattered. At that point I was getting a max of 5 hours of broken sleep, on a bench, a day. The rest of my time was spent sitting in a chair, watching my newborn baby sleep, with horrible & scary thoughts running through my head.

Sweet angel baby in the NICU

After three looooooong days, they finally were able to squeeze us in and did the MRI.  And it was the best news possible: everything looked ok.  Yes, she has larger than normal ventricles. Yes, her head is big. But it is not hydrocephalus, and there was no surgery needed.  When we heard that, both Omar and I burst into tears. Until that moment, I had no idea just how worried Omar had been.

Throughout all of this, starting back when I was pregnant, he had been a rock. He kept assuring me that she was fine, and since he is the one who obsessively googles and researches (and I am not, I rely entirely upon him for the information since he spends so much time gathering it), I believed him. But it turns out that he was really just trying to keep me from being too stressed while he knew the full extent of the possibilities of what could be wrong.  He kept me sane throughout all of this, for which I am eternally grateful. If I had had all the information and possibilities, I honestly don't think I would have been able to handle it. But I can't imagine how hard it was for him, to have all these scary "what ifs" in his head, but still be presenting a totally calm and optimistic front to me. Yet another reason I love him so.

This was such a hard experience.  It was so scary, it was physically and emotionally exhausting. But here's the silver lining: once we had the news that she was going to be ok, we were able to look around the NICU and realize just how incredibly lucky we were. We had the healthiest baby in that entire hospital. She was the only full term baby in there. She was the only breastfed baby in there, because the others were all so sick or so little that they had to have feeding tubes. All the nurses throughout our time there would come over and stare and comment on how much they loved having her there since she was so big and so healthy looking. Some of those other babies had been there for months. One had been there for over a year and wasn't leaving any time soon.  Even if she had had hydrocephalus and had to have the stint put in her brain, relative to the problems with these other babies, it was an easy surgery and her prognosis for a normal life was relatively good.

As Omar and I sat there, I can't tell you how many times we looked at each other and said "we are so lucky, we have the healthiest baby here."

And that is the blessing I want to always remember.  There are so many that are struggling with so much more. We are so incredibly lucky. We have two perfect daughters.  We have bright futures to look forward to, and relatively easy roads to get there. We are so thankful.

I love this little girl so much. Her big head, her large ventricles....they are perfect. She is perfect. And I hope we never forget just how blessed we are.