This is the story of how I almost lost my baby to something I had never heard of before.
Jayne was born on Christmas day. A miracle baby, the best Christmas present ever. A few days after my sweet baby Jayne came home from the hospital we noticed she was very mucousy. At night when we would lay her down it was the worst, she sounded awful! She was spitting up mucous, her nose wasn't runny or stuffed up, it was just in her mouth and in her throat which was strange. We could hardly sleep we were so paranoid that she would choke or stop breathing. Newborns make all sorts of funny noises when they sleep in the first few weeks, but as it got worse we knew it wasn't normal. We had been praying for Heavenly Father to watch over our sweet baby girl and help us to know what to do. Well, it was after business hours on New Years day, so we decided to call the 24 hour nurse line to see what we should do, because we obviously knew it wasn't normal and were getting more and more concerned. She told us that she needed to be seen by her pediatrician, so we called the next morning to get an appointment, they were packed full for the day, but when Dr. Park heard that our week old baby was having raspy breathing she made time and fit her in that day (I kind of think that she skipped her lunch break to see us). We went to the doctor and undressed little Jayne to get her weighed and have the doctor look at her. It was then that we discovered a big blister looking sore on her left side under her arm. We had not seen that sore before and were really surprised by it. When the doctor came in we showed her and then noticed that Jayne had two more small blisters inside her mouth. Well, it was obvious that Dr. Park was pretty concerned about it and she stepped out to call the neonatalogist at the hospital. When she came back in she told us that the neonatalogist wanted her to swab the sores for HSV. Herpes Simplex Virus. Yes.
Herpes. Are you kidding me?!
Before I continue, I will educate a bit on the matter. There are two different kinds of herpes, type 1 and type 2. Type 1 is simply the cold sore virus, type 2 is a sexually transmitted disease, genital herpes. Now let me be clear here, I do not have genital herpes. They were testing my sweet 8 day old baby for HSV 1, the cold sore virus. Now, this was also a bit absurd to me because I have never had a cold sore in my life! Neither has David, where in the world would she have gotten it from? No one that I knew of that had been around her in that first 8 days had cold sores.
Since it was a Friday, over New Years day weekend, it took until Tuesday to get the results. Dr. Park told me the news over the phone that my newborn baby was positive for the HSV 1 virus. I cried. I didn't really know what that meant, but it made me sad. She then told me that I would need to take Jayne to the hospital immediately to be admitted for a minimum of 14 days. Then I cried a little harder, this must be pretty serious. I called David home from work, we left Noelle with my mom and went straight to the hospital and up the the NICU. The neonatalogist, Dr. Singhal met us there and began telling us some pretty scary stuff. He did not sugarcoat anything. They would need to do a spinal tap on Jayne to test if the virus was present in her brain. If the virus was in her brain than the chances of brain damage or death were extremely likely. They would be starting her on two antibiotics and an antiviral immediately. She would need to be on the antiviral, Acyclovir, for 14 to 21 days, minimum. They kicked us out of the room so that they could do the spinal tap and IV. I couldn't believe this was happening. Just a few days ago we brought her in to the doctor for a completely different reason and now we were in the hospital, confused, overwhelmed, and wondering if our baby was going to live, have brain damage, or even die. I was in shock.
When they brought us back into her room, the doctor began to tell us more about neonatal HSV. He first told us that 80-90% of people have HSV 1, whether they get cold sores or not, you may have HSV 1 and have never had a cold sore in your life and may never get one. People periodically shed the virus, our little Jayne literally could have gotten this from anyone. He explained that there were 3 different types of Neonatal HSV. One is just skin lesions, skin, mouth and eyes. One is present in the blood, which causes sepsis, in which the baby can get very ill very quickly, basically the virus spreads through the body and begins shutting down the organs, killing the baby, sometimes with barely noticeable symptoms. The last one is present in the brain, which can cause meningitis, severe brain damage is likely and of course death. Now we would have to wait two days for the test results to see whether the virus had spread to her blood or brain.
The test results came back a whole day earlier than expected! It wasn't in her brain! Thank goodness! That obviously was the biggest concern because of the likelihood of brain damage or death being so high. They did find that she was septic though, the virus had spread to her blood, so it wasn't just simple skin lesions. Now that she was on the antivirals we wouldn't have to worry about the virus spreading to other parts of her body and shutting down her organs, there should be no long term effects. I have never been more relieved in my life! I was so relieved I started crying as soon as the doctor left because I was so happy, I hugged and kissed my little Jayne, all covered with tubes and wires and said a prayer of gratitude to my Heavenly Father. Over then next several days we began to realize more and more how blessed we were to have caught her sickness when we did. Dr. Singhal said that when little Jayne was admitted just the day before that he thought that she was lethargic, she had a weak cry, she slept a lot and didn't eat very much. As time went on she was more alert, had more awake time during the day, she had a strong cry and was eating like a champ! The other symptoms of her being sick, besides the skin lesions, her sleeping a lot, not eating as well (compared to how much she was eating at the hospital anyway, it wasn't really noticeable at home) were so hard to notice with her being a newborn and those being normal newborn things! We may not have noticed her being sick for several more days, by then it could have spread to her brain or her other organs and it could have been too late. Dr. Singhal, after seeing how she improved in the first few days, believed that she most likely would have gotten much sicker and that we were very lucky to have caught it so soon.
We learned a lot more about neonatal HSV over the next few weeks. The mortality rate in the type of HSV that Jayne has is 25%. 1 in 4 babies who get this die. Holy crap! I had never even heard of this before so we asked how common it was in newborns, Dr. Singhal said that in about 6 years he has only seen 2 or 3 cases including Jayne, and one of them died. It's not super common. It's not very common because usually the mother already has the virus and has passed on antibodies to the baby in utero. Dr. Singhal theorized that possibly I had never had the virus before and recently contracted it, most likely in my third trimester of pregnancy, in which case Jayne wasn't given sufficient antibodies from me to fight off the virus when she was exposed after birth, but that's just a theory, we'll never know for sure. Basically it has to be a "perfect storm" type scenerio for a newborn to get the virus. Lucky us! Here is a news article from several years back about a baby who wasn't as lucky as ours; http://abcnews.go.com/Health/ColdandFluNews/story?id=6150484
We have to keep a lookout for more lesions, Jayne has to be on oral antiviral medication for 6 months, 3 times a day. We also have to go to Indianapolis every 6 weeks to see an Infectious Disease Pediatrician at Riley hospital and get blood drawn to test her kidney and liver function (because the medication she is on can sometimes cause issues with those organs). We had our first visit there about 2 weeks ago and the doctor said Jayne looks great! After about 6 months HSV 1 isn't that big of a deal anymore I guess, at least it isn't life threatening anymore, because babies immune systems are strong enough to fight it off normally. If she were to get another sore before then we would most likely have to readmit her to the hospital because of the original fears that it may spread to the blood or brain. But, so far, so good! She may never even get another sore in her life! That's what we are hoping for anyway.
I know that Heavenly Father was watching over us though. I mean, we called for mucus in her throat, got fit in to see the doctor last minute, found the lesions while
at the doctors office, she had the presence of mind to call the neonatologist
immediately, who told her to swab the sores
immediately, which all made it so that we caught her sickness and started treatment before it spread too far, and it was because Heavenly Father watched over us, answered our prayers to protect our daughter and help us to know what to do. When I think of how blessed we were in that whole situation I start to tear up, because all of those little things added up and saved my baby's life, my poor helpless baby girl is perfectly happy and healthy now because of a phone call made at the right time, good doctors who cared and answered prayers.
Here are some pictures from Jayne's stay in the NICU:
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| Right after first getting admitted and getting poked a million times, she was exhausted. |
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| We're in this chair for almost every picture because all the cords she was connected to made it so that she only could reach about 3 feet from her bassinet. |
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| Her arm all wrapped in a padded tube thing so she wouldn't pull out her IV. |
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| Napping with daddy. |
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| Getting some cuddle time with mama. |
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| Baby IVs don't last very long because their veins are so small and fragile, so they have to get new ones every few days, they were running out of good places, so she got one on her head, so sad. |
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| I was extremely happy to find this little note when I arrived at the hospital. |
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| Doing so good holding her head up. |
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| Pic line in her foot. |
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| Bruised little hands. |
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| Finally coming home after two weeks in the hospital! We were so excited! |
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| Finally seeing grandma and big sister again. We're thankful my mom extended her trip another two and a half weeks to help us while little Jaynie was sick. She became Noelle's bestie. |
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| First full day home and my first day home alone with both my girls! So happy! |
Jayne has been home about 6 weeks now. She's about 2 1/2 months old. She is a great baby. She is happy, she smiles a lot and makes the most adorable baby coos, she lights up when she sees me, which makes my heart so happy, she sleeps great, goes to bed around 8 and often does 6 hour stretches at night, only waking up once to eat (sometimes twice). She doesn't cry much, she likes to look around and watch what's going on around her. She loves to cuddle but doesn't need to be held all the time to be happy. She is adorable! And I mean she is a beautiful baby! She has the cutest little nose and precious little lips, she has amazing eyes, they are big and alert and her eyelashes are long and thick. She has a birthmark on the back of her neck, but I'm going to be honest, I didn't notice it for several weeks because it's under her dark hair right where it's the thickest. She has a stork bite on her forehead between her eyes and one on her right eyelid, but those have already faded quite a bit and I expect they'll disappear completely before her first birthday like Noelle's did. She's a little miracle, I adore her and I love her completely! I love my little family!
P.S. Oh, and just for your information, HSV 1 lesions aren't always just on your lips or eyes, you can get them anywhere on your body. Jayne's was on her side under her arm, so if you ever have a blister looking sore and you don't know what it is, or a cold sore, don't go near a newborn! This could happen to you, and you may not be so lucky.
