Every new parent’s nightmare is that something is wrong with their child. Of course for most people this fear never comes to pass and you get to take home a health little baby.

As most of you know, our daughter V has quite a bit going on medically, mostly due to a genetic condition she was born with called Incontinentia Pigmenti.

The month of October is Incontinentia Pigmenti awareness month and I would really like to share our story, however, I have to start at the beginning, which means sharing about being NICU parents.

After 10 days of prelabour, 12 hours of active labour, issues with monitors picking up heartbeats and the use of a vacuum to assist in delivery, our beautiful baby girl was born; this was last October and everything about her was perfect. The only thing that the pediatrician was slightly concerned with was she had some blisters on her left forearm, she thought they were suckling blisters from in utero and just asked to keep an eye on them.

We waited the 48 hours for discharge as I had group B strep and they wanted to monitor her. Everything looked perfect. Blood work was normal, she was healthy, was latching and eating well, good diaper output, hearing was great, everything was fine. We were getting ready to go on the morning of day 2 after her birth when I noticed her blisters on her left forearm had spread to her left inner thigh. I mentioned this to the nurse who was prepping her first bath. The nurse didn’t seem concerned, just went to tell the doctor.

Suddenly the pediatrician is there saying she wanted to bring our daughter into the NICU for some quick checks to make sure it wasn’t serious.

I remember walking with them into the NICU thinking “this can’t be real, my baby girl is healthy, nothing is wrong.” They immediately started an IV and had her under big lights. There were monitoring cords everywhere and all I could think was “she looks so tiny, don’t let anything happen to my baby!”

They explained that they were concerned that she may have Herpes Simplex Virus (HSV), and that they were going to need to do a Lumbar Puncture (LP) as well as gather skin samples to send off for testing. They politely asked us to leave while they performed the procedure. My husband and I had to walk out of the NICU utterly terrified and praying for a miracle, trusting the doctors and nurses to take care of our newborn baby.

That was likely the most scared I have been in my entire life. Pacing in our hospital room, waiting. My parents arrived, thinking they were going to help us pack up and go home and the moment I saw my mom I just started bawling. How do you explain when you don’t even know what is going on, when you don’t even know if your baby is okay?

After over an hour we finally got back into the NICU. Not only did they fail to get the LP, they tried twice and failed both times. As you can imagine it is hard to hit the right spot on such a tiny little spine. We were transferred to an isolation room as HSV is contagious and obviously don’t want any other babies catching it as it can be life-threatening in newborns as it can cause encephalitis.

That room is where we stayed for the next 8 days. It had no windows. It had a pull out couch bed thing not really fit for one person, let alone two. We were told only I could sleep there, but after the first night a nice nurse said we both could stay if we wanted (ummm, YES). There were cords all connected to our little girl monitoring her HR, oxygen saturation, respiratory rate, and blood pressure at all times. I was able to disconnect the cords to breastfeed or hold her, thank goodness, but she also had an IV running at all times. She got 4 different medications throughout the day and night through her IV: antibiotics and antiretrovirals. She got assessed every 4 hours by the nurses, which included a temperature check which she HATED. She had many blood draws done for blood tests, I honestly lost count of how many times she got poked.

It was impossible to clothe her as it pulled on her IV (which we tried to avoid as they kept pulling out). You had to bring the IV pole everywhere and man did that get irritating, which is small in the grand scheme of things, but it was so frustrating.

The worst part was that we didn’t know anything and her blisters kept getting worse. They were spreading over her entire body and the medical team didn’t have any answers. She had 3 LPs in total, 4 different IVs, dozens of blood draws. We saw 6 different pediatricians, 1 neonatologist, a dozen nurses, and 3 midwives (checking up on me).

Unfortunately James had to work because he had projects that were overdue. He stayed as much as possible and tried to be as present as possible. His co-workers were amazing and even sent him back to the hospital told him who cares about the clients. Spend time with your family.

The first night that we stayed in the NICU, where we were told only 1 guest per patient, I felt so completely alone and terrified. I just kept staring at my little girl in her crib, with monitors beeping and just bawled. I just wanted to hold her and make everything better. I wanted James to be there because all I needed was a hug and to be told that everything was going to be alright.

We kept asking about timeline, when will we get answers, and at first it was soon, then in a couple days, and then we were told 2 weeks, which changed back to a couple days, and so on and so forth. We were beyond frustrated. We wanted answers. What was going on with our daughter and how could we help her?

One thing I have respect for now, as a Licensed Practical Nurse myself, is how long a day takes as a patient. When you live in a moderate size city and are conferring with specialists hours away, replies take forever and you are just sitting there waiting for answers.

Once we were thinking it may no longer be HSV due to negative tests, then it was looking at what it could be. After hearing back from Infectious Diseases they said, “Definitely HSV, follow this treatment plan.” The same day dermatology responded with, “Likely not HSV, perhaps Incontinentia Pigmenti, especially if family history indicative.”

So of course I was grilled about any maternal medical conditions: alopecia, odd shaped teeth, dark swirly skin, pale skin patches, miscarriages of primarily male children. Nothing made sense. What did this have to do with anything? No. We didn’t have any of those conditions.

The next day we hear from Infectious Diseases again, “Stop antiretroviral treatment immediately. Definitely not HSV as per dermatologist. Follow up with dermatology.” Wait, WHAT! So because of one email from dermatology you are changing your stance from 100% one thing to 100% something else. Our child’s life is in your hands! Stopping treatment early could cause irreversible/life threatening damages if wrong.

We couldn’t take that chance, that they may be wrong. So we decided to wait for the second batch of special testing to come back from the lab 4 hours away. Confirmed a second time, not HSV. So what did this mean now?

This meant a whole new bout of specialists. We got an echocardiogram done, saw a pediatric ophthalmologist and got an in depth eye examination, got referrals to see the dermatologist, geneticist and genetic counselor. Finally we were sent home to wait and hope that we would get answers soon.

Our journey in the NICU was terrifying for me as a parent. It’s the last place you ever want to be with your newborn baby. I struggled with inadequacy; did I do something wrong, why is God letting this happen to us? I couldn’t do anything for her to make her better and she just kept getting worse. We had no idea if she was in pain. We just knew we loved her and would do anything for her.

I know that we were so blessed to have a baby that was quite stable while in the NICU. I can’t imagine the terror of watching major interventions be performed on your little one.

All this to say, everyone’s experience in the NICU is so incredibly difficult and challenging. For those that have children at home, to be torn between who you stay and take care of must be extremely difficult! For those who’s significant others can’t stay with you and be your support, or those that don’t have visitors who can come and lift you up, it can be so draining and lonely!

I want to give a shout out to all the doctors who did their best for our daughter, for the nurses who went above and beyond, breaking a few rules for us to make our stay as comfortable as possible, thank you from the bottom of my heart. We were in the NICU over Halloween and we got given a little handmade Superman cape, which of course we declared was a Supergirl cape. We have 2 special homemade quilts from the NICU as well that holds a special place in our hearts.

Our little V was our Super Girl. She was so strong, definitely stronger than me. She didn’t have any issues with IVs or blood draws. She rarely cried and honestly was way too content considering we were closeted in about 100 sq feet of space for over a week. She was an absolute trooper and I feel so incredibly blessed to call her my daughter.

To all those NICU parents, I know how difficult your journey is. It is terrifying. Even now, thinking back I start to bawl and feel almost panicked. You are so incredibly strong. It is not easy, but know you are not alone. ❤️