Tuesday, March 14, 2017

Beatrice's big weekend, details.

We had an eventful Saturday.

Beatrice has been having trouble gaining weight, spitting up SO DANG MUCH, and just generally being grumpy about eating. So, just like we did when Freddy was a wee two week old, we decided to fix her tongue and lip ties. It was a fairly traumatic experience when we did it with Freddy. He had to have it done twice, once with an ENT and then again with a dentist two weeks later. When he was two weeks, we had the first done. We thought Miss Beatrice would be better off getting it done ASAP just like with him. 

Our dear friend is also our dentist, and has the laser, the expertise and experience to do it, and we trust him implicitly. So, on a Saturday, he kindly offered to come in and take care of her quickly so we didn't have to wait for an available appointment. 

I was dreading it a bit just because it had been traumatic to do it twice with Freddy. Basically, I knew it was for the best long-term for feeding, speech, etc to do it and do it quickly, but I was just not wanting to do it. 

Nonetheless, I marched her and myself in there, and the deed was done. It was quick, she had numbing medication so it didn't hurt, she was just way grumpy about having her mouth messed with. 

Five minutes in and out, and we were on our way home. She fell asleep and snoozed. We stopped at the store so Derek could run in for... I can't remember. Anyway, she woke up and wanted to nurse since the meds had worn off. I pulled her out of her seat and noticed she was...pale. Oliver commented that she looked kind of gray. I had to agree. It was weird. But she was acting basically normal otherwise. So we nursed, put her back in her seat and headed home. 

She was still not looking great when we got home. I decided to call the ped nurses line to just ask if a weird color was a normal side effect of a simple procedure. The nurse was stumped, and so was the second nurse I called after that. 

Neither suggested we take her in. One did say that if she was still gray in the morning, take her in. 

At that point, Derek and I saw that she was getting worse, not better. I felt like an idiot. This had NOT happened with Fred. The color changing from gray to purple was scary, but the nurses had both seemed unconcerned. So we decided to go to urgent care. "Better safe than sorry" Derek assured me. I was worried, but didn't want them to just roll their eyes at a seven-time mom overreacting. 

By the time we got there, though she'd gone from purple to blue. BLUE, My two week old baby was BLUE. 

I'm so grateful there was no wait. They took one look at her and called an ambulance. 

I explained, while we waited the agonizing minutes for them to arrive, what had happened. The doctor called the pediatric ER and explained what had happened. The on call doc had it diagnosed before we had even arrived: 



I had literally never heard of it at all. AT ALL. 

Basically, she had reacted to the numbing medication(s) that had been used. It was causing her body to not oxygenate properly. The hemoglobin can carry the oxygen but can't deliver it. Her levels were just rising and rising, which is why she got more and more blue over the two hours. 

The ambulance ride was fast. Normally it takes a half hour to get to the hospital. It took half that. Lights, sirens, the whole shebang. I was super impressed with the EMT who managed to get an IV in my baby's tiny veins whilst hurtling down the highway. Amazing. 

At the ER, the doctors and nurses went right to work. Oxygen flowing, blood drawn (her blood was dark orange, like the color of iodine), all the things. I stood by her, sang to her, kissed her little head, and just held whatever parts of her I could get. 

The doctors had never seen methemoglobinema. EVER. They were all on their phones GOOGLING it, but they just kept working. When labs came back, her levels of methemoglobin were sky high, so she was treated via IV with a medication called Methylene blue. It's literally bright blue. Derek, who had taken all the other kids home, had grabbed a neighbor to babysit and arrived right about then. 

We were told that the nature of the condition and the use of the medications meant she'd need to be admitted. Unfortunately, the hospital didn't have a PICU so we had to transfer. Once the meds were fully in, and her oxygen levels had risen, she and I got to ride in another ambulance down to Boston childrens. 

No one there had ever heard of methemoglobinema either, except for the toxicologist. 

Her O2 sats stayed brilliantly at 100 on oxygen, so we moved her to room air, and go to our room, and she just stayed steady. All,night.long. She was amazing, She screamed at everyone who touched her, but we all didn't care because she was doing so dang well. She nursed and slept, and nursed and slept, and her vitals never waivered. I nodded off a couple times, but mostly just stared at her. Because it's the PICU we had "one to one" care, so our nurse only had Beatrice as her patient. She tried to get me to sleep explaining that "I get paid to watch her!" but no. After the day we'd had... no. It wasn't going to happen. 

Sunday morning, she was visited by... 8? doctors, more nurses, everyone wanted to hear the story of the crazy acquired methemoglobinema from lidocaine. More labs showed that her levels of methemoglobin which had been at 30 (WAY TOO HIGH) Saturday afternoon were now 1.5. She was going to be fine! A million years later, Derek came to rescue us, and we were on our way home. 

Monday, life resumed as normal. And let me tell you, all day, as I did mundane, normal things, I was overwhelmed with gratitude to our Father for the priviledge of having a regular day, with all of my children. It could have been so different. If we'd waited... 

Derek asked our nurse the question I had been too afraid to ask: Would this have resolved on it's own if we hadn't brought her in? 

The nurse was very blunt. No. Her levels were too high. 

If they hadn't put the pieces together as quickly as they had. If it hadn't been a Saturday... if those particular doctors hadn't been working when/where they did. If the pharmacy hadn't stocked a totally random medication that no one ever used... 

Our lives get to go on without heartbreak, without grief because all the pieces that came together protected  our tiny daughter. 

I can not stop praising God for the gift of HER, of geting to keep her when so many things could have made that not the case. 

So, now, life is normal. She can't ever use any sort of topical or injected numbing in the -caine family, or even over the counter versions (think orajel) or herbal rememdies like teething tablets. And her peditrician might want to do enzyme testing later when she's bigger since this is directly related to an enzyme deficiency. Some tiny babies do have the deficiency but it resolves later, which is what we think happened. Beatrice just happened to be one of the ones who lacked the proper enzymes to break down the numbing meds and just happened to have those exact meds administered before it resolved itself. 

Luck of the draw? Maybe we should have waited? Or would it have happened no matter when we did it? Two weeks later? A month? We make the best choices we can with what we know. 

It comforts me a little knowing that no one had ever seen it, and that it IS rare. We couldn't have known. 

But still. 

I'm just plain grateful. 

This is when she started to look "off". Normally she's quite pink/red. It got much, much worse. 

Going for ride number 2 in the ambulance. It was 12 degrees, so the towel on her head was warmed to keep her body temp up. By this point, the cynotic blue was faded. She was already so much better. 

Off oxygen and doing great on room air! 

Dressed and ready to GO HOME! 


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