The Plague

A brief health update on Jacob.

Last Saturday, Jacob started to sniffle. Next thing we knew, he had developed a full-blown upper respiratory infection, complete with rivers of thick green snot and a fever. We pulled back on his protein intake – He wasn’t hungry anyway. – and kept tabs on him. Daddy got evacuated from the master bedroom so I could have a comfortable sick room for us to basically lay in bed all day.

This was terrible timing, because Jacob’s Uncle Kevin and his family were visiting.

We were hoping for a quick recovery, but on Monday afternoon Jacob started acting strange, crying pitifully and shaking. Jacob’s Mamaw and I rushed him to the Lakewood Ranch hospital. I didn’t feel we even had time to go to Tampa General.

When they told me his fever had reached 105, I was floored. How did I not notice that he was getting worse? Was he regular sick, or, to borrow a phrase from my fellow citrullinemia mom blogger, citrusick?

Jacob barely moved when they drew blood and set up the IV, just reached for me crying, “Mama, mama” so, so softly. I steeled myself for a long hospital stay.

His ammonia was 16.

16.

That’s the lowest it has ever been.

We gave him Motrin and his temperature dropped to 102. We were home by bedtime.

You know, I have no idea what an ammonia crisis looks like for Jacob. I don’t ever want to find out. Regular sick is hard enough.

 

Excuses

It has been a long time since I have published a post. Months. The longest since I began this blog.DSC_0361

Here are my excuses.

  1. Jacob has been doing great. This is the happiest reason to not publish. We haven’t been to the hospital since I can remember. If you are reading this, please shout hallelujah and knock on wood at the same time, just to cover all our bases.
  2. I have been doing lots of writing outside of this blog. I have the great fortune to be working as a freelance marketing coordinator for Big Sea. I can’t even tell you all how lucky I am to have stumbled into this job. I work for and with amazing people who live their values. If you need marketing services, you would be foolish to hire anyone else.
  3. I have a 13 month old at home. He’s walking. He has figured out how to open doors. I no longer sit down.

But, enough with the excuses. It’s time to ramp up this blog again, because it brings me great joy to talk about my little ray of sunshine, and because my mission – to become a resource for other citrullinemia parents – has not wavered.

Also, I know a whole heck of a lot more about blogging now. And I might as well put that to good use.

What does Jacob eat? (An update)

IMG_0788You may remember from a post a few months ago that we were very excited to start Baby Led Weaning with Jacob. Since then, his food allowance has gone from .5 gram of protein a day to 3 grams of protein! (If you’re new to the blog, children with Citrullinemia are on a severely restricted protein diet. They must receive exactly the amount of protein their body can use – no more, no less. Too much or too little puts Jacob at risk of brain damage and coma, or worse.)

Like almost everything else in my parenthood journey thus far, our solid-introducing experience has not gone, shall we say, by the book.

Initially, Jacob seemed interested in playing with food, but as soon as a lump would hit his tongue he would vomit. Like clockwork. His little face would turn red, his eyes would water, and out would come the offending particle along with anything else that had entered his stomach in the last, oh, few hours. In that way, we lost quite a bit of formula and (horrors) breastmilk. Finally, I had to put a stop to it and introduce purees.  I dutifully went to the farmers market, purchased armfuls of gorgeous organic veggies, and set to making homemade purees, measuring each ingredient and using a spreadsheet to calculate grams of protein per serving – only to have Jacob reject over half of the options I offered him.

Finally, exhausted with the unappreciated effort of producing and measuring my child’s food, I went to store-bought organic purees. Tangential note #1: I recently managed to start a flamewar on the internet in a Facebook group about home organization when I indicated that I feed my child from packets.

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Tangential note #2: There is no limit to the uses of this meme. Game of Thrones FTW. I’m geeking out here, people.

At any rate, store bought purees were a life saver. I could buy one flavor at a time, figure out which ones were his favorites, and go from there, introducing new tastes little by little. Since the protein content was indicated on the label, all I had to do was measure how much of the packet he actually ate. Purees, teething biscuits, and occasionally oatmeal have been the staple of Jacob’s diet for the last few months. (Behold below, the puree drawer image that started the internet flamewar.)

Until a few days ago, when Jacob’s little lips closed tight against the introduction of purees. Frustrated, I steamed up some purple cauliflower from the market, chopped it up, and dumped it on the tray. In it went. No vomiting, no fuss, just a happy eating baby. Carrots! Grapes! (Peeled and quartered! Don’t arrest me, mom police!) Cheerios! All happily consumed!

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I am finding that Jacob is now eating less, and slower – which means we may need to temporarily adjust down his protein allowance and make up for it by reintroducing natural protein into his milk. But I am so happy to see him begin to practice those fine motor skills and tolerate textures!

I also need to correct an earlier assumption of mine – that Jacob would be vegan. In a conversation with Erika yesterday, I learned that many children with citrullinemia will eat cheese and other dairy products as their protein allowance increases with age. These complete proteins are good sources of nutrition for UCD kids. I have to tell you something she said because the image is so beautiful in my mind. “It will be easier for Jacob to be a vegetarian than a vegan. You know, when he is a teenager and goes to a restaurant with his friends, he can always order a cheese quesadilla and be on his way, rather than having to search out a vegan option.” Can you imagine? Jacob? A teenager? In a restaurant with friends? Ordering a quesadilla? It is so normal and beautiful. Isn’t that what we all want for our children?

The hospital visit I almost didn’t write about

Jacob had a few episodes of vomiting and a mild fever last Thursday, which lead to a hospital visit on Friday. Never mind that the vomiting was probably from his maddening habit of shoving his fingers down his throat. Never mind that the “fever” was probably just overheating from snuggling his little furnace of a body in between us in bed when he wouldn’t stay down in his crib. With citrullinemia, we don’t assume “it’s nothing.”

The bloodwork came back. Ammonia and liver function both normal.

I almost didn’t write about this short hospital stay because it was “just another routine outpatient visit.” At some point, taking my child to the ER for bloodwork and an IV became as unremarkable as a visit to the pediatrician.

But today I decided to write. I write to give weight to the unpleasantness that Jacob has to endure on these visits. I write to give life to his medical records. I write to remember how my sweet baby, exhausted from the trauma of placing the IV, slept in my arms on the narrow hospital bed. How his doctor, in a blue wig and red foam nose on the day before Halloween, came to check on her tiny patient, and how his dietician kissed his sleepy head. How his grandmother sat in the plastic hospital chair in the cramped ER room for five hours to keep vigil over her beloved grandchild.

Until Jacob has the words, I will bear witness to all of his story.

Jacob is tougher than I am.

I am tired. Jacob came down with a cold? stomach virus? and after three episodes of vomiting we were forced to take him to Tampa General for labs and IV fluids. By now we know to ask for the vascular access team, so the blood draw was no more upsetting to him than having his temperature taken (which, to be fair, upsets him quite a bit). Happily ammonia was 37 and we needed to stay only a few hours to get him rehydrated. Of course the little bugger took two bottles like a champ without vomiting in the hospital, and vomited the entire contents of the bottle we offered him when we got home. I was scared that he would get worse in the night, so I slept on the floor in his nursery so I would hear every toss and turn.

Today he is better. And I am tired. Of all of it.

I just want to cuddle my baby when he’s sick, not take him to the hospital to force fluids in him.

Because if you think I’m tough, I’ve been fooling you. Jacob is tougher than I am. This is him at the hospital yesterday (less than an hour after vomiting up an entire bottle on his dad, the rocking chair, and the nursery floor).

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Look at that smile. Like nothing is wrong in the world. Thank God for that smile. Thank God for my husband, who is strong when I’m not. Thank God for Jacob’s grandparents, who rushed over the moment we called to pack up my half-prepared lunch and hold Jacob while we cleaned up the nursery and packed for the hospital. Thank God for Jacob’s grandparents who live miles away and offered prayers and support from afar. And thank God for God, who has had His hand on Jacob from the beginning. The only reason I’m standing right now is because I’m leaning on Him.

Clinic, and the surgery that wasn’t

This week was a busyJacob USF citrullinemia clinic one in Jacob world. Jacob turned six months old (!) this past Sunday, so it was time for his six-month clinic visit. We made the trek up to USF on Tuesday to check in with our dietician Erika and the metabolic geneticist Dr. S. Jacob charmed one and all with his sweet smiles, and even thanked Erika for her endless efforts on his behalf with a big hug. (I wasn’t quick enough with the camera, though, so in the photo he is looking at his daddy.)

Jacob clocked in at 20 lbs 10 oz and 28 inches long. Everyone was delighted to see that he was physically and developmentally on track. It was especially striking to me that he was just starting to babble at our last visit, and now he is sitting up and saying “Mama”! He is also grasping at anything and everything nowadays, which means it’s only a matter of time before he yanks out his Mic-Key button. In the picture you can see Justin trying to distract him from doing just that!

Jacob was very brave for his blood draw, which was sent off to the lab to check his ammonia levels, liver function, and Jacob USF citrullinemia clinicbranch chain amino acid levels, among other things. We are still waiting for those results.

At lunch after clinic, with a very tired Jacob sleeping in his stroller, Justin and I marveled over the genuine love that Dr. S. and Erika show towards Jacob. I don’t use that word lightly. They would – and have, and will – move mountains to keep him as healthy and thriving as he has been in the first six months of his life.

While at clinic, we also checked in with Dr. S. about procedures for Jacob’s surgery scheduled for Thursday August 6th. (Surgery, what?!?) When Jacob’s surgeon placed his g-tube on February 13th, he saw that Jacob had two inguinal hernias. We were advised at the time that we would need to have them surgically corrected sometime between 8 weeks and 6 months. Since Jacob had already been through so much, I opted to wait as long as possible and scheduled the surgery for August 6th. Because Jacob has a metabolic disorder, it is unsafe for him to fast, especially before undergoing anesthesia, so we had him admitted to the hospital on Wednesday night so that he could have IV fluids with dextrose while NPO. After a very uncomfortable night in a hospital “recliner,” (for me – Jacob slept great in his crib) we were ready for the surgery. Even though he must have been hungry, my little trooper was smiling, and then promptly fell asleep in his daddy’s arms in pre-op.

Our surgeon, Dr. R., came to check in with us, reassuring us that he had been texting with Dr. S. and that she had instructed him to take good care of “her baby.” As he went back for surgery, we were told to expect about an hour and a half, so we decided to grab a quick bite to eat to take our minds off of it all.

When we returned after an hour at lunch, we were quickly ushered back to post-op. The surgeon was waiting for us and, wait, was that a grin? And why was Jacob already out of surgery and happily gurgling in the arms of the post-op nurse? “Well,” said Dr. R., “this was an unusual situation. We went in with the camera, and there were no more inguinal hernias. They had healed up completely.” He went on to tell us that he had done hundreds of surgeries exactly like this, and this was the first time he had seen this happen. Moreover, one of his colleagues was literally writing a book on the topic, and had stated in the book that inguinal hernias never close by themselves. A quick internet search just moments ago resulted in the same information: “Inguinal hernias never go away without treatment.”

We have photos of the hernias from the first surgery, labeled with Jacob’s official hospital label and brought to us personally by the surgeon immediately after his surgery. And we have photos from today showing the same areas, completely closed.*

Explain that, science.

Jacob is my little miracle baby.

Jacob Tampa General Hopsital post-op

Jacob recovering from the surgery that wasn’t

Post Script: I absolutely adore the amazing people who work at Tampa General Hospital. In the last six months, we have been there once as outpatients and three times as inpatients, and every time we have been treated with kindness and respect by everyone we encountered. We couldn’t ask for better care for Jacob. Kudos to you, TGH.

Case in point, this charming tag they put on Jacob’s door today indicating his metabolic needs. Love.

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*I may post these at a later date, but I am too worn out today to get up off the couch and scan something. #firstworldproblems.