Maisie has been sick.
Not in the “she has a cold” kind of way but in the “what the eff is wrong here and why isn’t she getting better” kind of way.
Around the beginning of April she started spitting up – a lot. She slowed down in her weight gain, to a crawl… She also started getting a rash on her face.
I didn’t think much of the rash – actually what I thought was that I had had a ‘bad mommy’ moment and left her sleeping in her spit-up for a little while before noticing it (just imagine the guilt). It started as funny looking pimples and then there was a period of connect-the-dots and then it just completely covered her left cheek.
It started to peel and we thought that it was getting better, only it kept spreading across her face, into the corners of her mouth, across her ear, behind her ear, the nape of her neck and then it started on the other cheek.
Around the same time the fold above the nails on both her fingers and toes turned brown, then got very inflamed and then peeled.
Also around the same time, she got a diaper rash. She’d been dealing with thrush for a little while so it was believed that it was all related and treated accordingly. But…. it simply continued to spread and get worse.
I’ve been taking Maisie to the doctor probably 2 times a week. We’ve been to see ‘specialists’. No answers. At least none that made any sense. It was even insinuated that we were not changing her diaper enough and that was why she had this terrible rash. (!!) (We got schooled on how to clean the poop off of her bottom! Really!?! Are you kidding me?!?)
Maisie has been slathered with Hydrocortizone cream, Mupirocin cream, A and D cream, Lanolin, Burt’s Bees, Climb On, Lotrimin (jock itch cream) and stuff that I cannot even remember. She’s also had 2 different oral antibiotics along with oral and topical thrush medication (Nystatin and Diflucan). NOTHING made a difference.
I started hiding my sweet baby. She still went out with us but I would cover her with blankets so that people could not see her face. Every once in a while someone would ask us about it, most often in the dr’s office. I would answer that THAT was why we were sitting here in the waiting room.
I was scared that it was contagious and stopped Eamonn from touching her. And then because it kept going on for so long, I let him touch her again. I figured that if it was contagious, I would have gotten it from her already, since I handle her every hour of every day. I stopped kissing her sweet face, at first because we thought it was contagious and then because I feared that it hurt her. Then I started again because… dammit…. who can NOT kiss that sweet face.
During this time our sweet girl started to smile. She smiles so big that her nose crinkles. It made me smile and then it made my heart pinch… because soon the rash reached her lips and they started cracking. They would bleed every time she stretched her lips in a yawn, in crying… even with a smile. It was heartbreaking.
This past Saturday, she was hungry and, as with all recent nursing sessions, she cried and fussed while trying to latch due to the pain in her lips. She finally latched, nursed and fell asleep. As I laid her down and went to put my breast away, I noticed blood on my nipple. I lost it. Babies lips should NOT bleed when they are nursing. They should not have sores and rashes that do not heal. They should NOT cry when they smile.
I called the on-call doctor for our pediatrician’s office. I explained everything to her and she recommended yet another salve to soothe Maisie’s lips but also recommended that I bring Maisie into the office on Monday and request a STAT dermatology appointment….
Another dermatology appointment.
We’d already been.
To the Pediatric Dermatology office in Stanford – supposedly the best…
They are the ones who told us how to clean Maisie’s diaper area.
Let’s just say that I didn’t have a lot of faith in the ‘specialists’ at that point. But – I dutifully called on Monday morning, made an appointment with an available doctor (not our usual) that afternoon and went in. I explained everything to him, he looked, we discussed Maisie’s complete history and everything that she has taken in order to deal with this and he even brought another doctor in to look at it. I left with yet another, but stronger, oral antibiotic and a promise to call me again the next day with a referral to a dermatologist… STAT.
The doctor did indeed call me the next morning. He told me that there had been something niggling at him all night and that he thought that he might have found the answer to all of Maisie’s ailments, seemingly unrelated, now considered a complete picture.
A zinc deficiency.
He was not willing to commit to it but he wanted the pictures that we’d taken so that he could send them to the UCSF dermatology department. He also wanted Maisie to go for blood work to see if it showed a deficiency. Once again, my afternoon plans were changed drastically in order to search for answers. Shortly after sending the photos, I got a call from the dermatology office in UCSF with an appointment, in less than 24 hours. “Can you make it?” Hell yes!
Let’s just not talk about the blood draws on an 8 pound baby yesterday afternoon. I will just say… traumatic for both of us.
This morning Alan and I struck out for San Francisco and arrived at the office with 15 minutes to spare. We waded through the questionnaire and then the questions from the nurse regarding Maisie’s history, background and any medication she might be on and then she was examined by the fellow and more background was requested. Not much was said until the doctor came into the room. She was a very charismatic woman with a lovely smile. She immediately and confidently said that from just looking at the photos, she was CERTAIN that what we are experiencing is most definitely a zinc deficiency. It is easily remedied.
Supplemental zinc daily.
The doctor then went on to explain that Maisie’s history weighs heavily into this. Maisie was premature and did not get the stores of zinc that she would get in the final weeks of a full-term pregnancy. Then she didn’t get colostrum, which is also high in zinc. She also didn’t get a zinc-fortified formula… because I chose to breast feed her. This is where some assumptions come into play as no one really knows much about induced lactation. It is assumed that my milk is ‘older’ milk. My reading suggests that it would be considered the age of a 3 month old or older. There would be zinc in my milk but not in the higher concentrations that would be required by a premature infant who is about to ramp up their growth. We got to the point where her minimal stores were used up and the zinc content of my milk did not support her growth any longer.
The perfect storm.
Now, at least – no longer a mystery.
And my glass of wine this evening… no longer in desperation, but in relief and enjoyment.