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.

Gratitude

I have sat down to write this post numerous times, and each time I have been so overwhelmed with the magnitude of what I need to get down in black and what that I have walked away defeated. My words are limited in their capacity to convey the enormity of the love our family has been shown since receiving the devastating news of Jacob’s disorder.

One of the first things that Dr. S told us when we received the news was that this was not going to be easy financially. Jacob would need very expensive medication and formula for his entire life. Putting him in daycare would be risky for his health (at best, downright dangerous at worst), so we were going to have to consider living on one salary. There would be other costs down the road – hospital stays, medical equipment, developmental support. We were counseled to seek support from social services, but our good financial habits (saving money in various IRAs, for example), disqualified us from receiving the majority of them. But none of that matters when you are a parent. You will spend every last dime keeping your child healthy, happy, and safe.

Since we came home, one of the most commonly uttered questions in our household has been “how are we going to afford x?” What is incredible is that every single question, and I mean every single one, has been answered. Not only have our basic needs been provided for, but provided for in such a way that we are living happily, comfortably, and safely – well nourished, in a beautiful and safe neighborhood, and surrounded by family and friends.

Here are just a few of the most striking ways in which our needs have been met:

One of our dearest friends leased us his beautiful rental property, moving us out of the slightly sketchy south St. Pete neighborhood into a charming gated community in Bradenton, not even a 10 minute walk from Jacob’s Papaw and Mamaw. Simply stated, this made it easier for me to stay home with my son, which is a wonderful gift.

The Shorecrest Preparatory School community set up a trust fund for Jacob and solicited donations. We also shared the information about donating on Facebook and at Justin’s company, Savvy Card. The fund to date has earned over $7000.

All Children’s Hospital forgave the $1100 bill we incurred for Jacob’s surgery before he qualified for Medicaid.

The National Organization for Rare Disorders and Hyperion Therapeutics (recently acquired by Horizon Pharma) sent us a nearly two-year supply of Jacob’s medication, which was previous costing us over $250 a month. It cost us nothing.

Two middle school students at Shorecrest chose to put on a benefit concert supporting their family’s favorite charity – Heifer International – and split the proceeds, donating over $500 to Jacob’s fund.

Countless people have shown up at my house with food and baby-holding arms (key to allowing Mommy to get a shower or nap every now and then).

My parents and Justin’s have both cared for us in numerous ways – financial, practical, emotional – demonstrating to us that being a parent never ends, even when your children are in their 30s and have children of their own.

I hope that one day Justin and I will be in a position to repay all of this. Until then, I have to trust that this verse is true: “Give, and it will be given to you. A good measure, pressed down, shaken together and running over, will be poured into your lap. For with the measure you use, it will be measured to you.” May all of you, every single person who made it possible, at least for the moment, for us to focus on our son rather than financial fears, be blessed in great measure.

Jacob taught me to take the plank out of my eye

“Why do you look at the speck of sawdust in your brother’s eye and pay no attention to the plank in your own eye? How can you say to your brother, ‘Let me take the speck out of your eye,’ when all the time there is a plank in your own eye? You hypocrite, first take the plank out of your own eye, and then you will see clearly to remove the speck from your brother’s eye.” (Matthew 7:3-5)

Bet you didn’t know that Jesus had a snarky side. I love the hyperbole in this scripture. And it’s been in my mind lately because I have been thinking about judgement. I guess this is something that new parents do, especially because there are so many vehement opinions out there about the “right” way to raise a baby. Even though, like this author, I am fairly confident that that there is no “right” way, I still find myself wondering if, in the eyes of the world, I’m a good mom.

After Justin and I decided that my staying home was Jacob’s best chance for a healthy start in life, I signed up for WIC to help cover the costs of his formula and offset our grocery bill. The first time I used my WIC EBT card at Publix, I had some trouble with the transaction. There were several people in line behind me, and I ended up having to suspend my transaction and call the WIC hotline to reset my PIN number. I imagined what people were thinking. “If she can’t afford to feed her family, why did she have a baby?” or “Why are my tax dollars going towards food benefits for a young woman who obviously could work if she wanted to?” or “I wish there were a separate line for people on food stamps.” They had no way of knowing about Jacob’s citrullinemia, or that I have been working since I was sixteen and faithfully paying my taxes just like them. That this is just a bump in the road.

It’s the same thing with formula feeding. Before Jacob, I assumed that parents of formula-fed babies were lazy, or ignorant, or both. Now I have a little boy who is partially formula-fed because that is the only way to keep him healthy. When I give Jacob a bottle in public, I wonder who is sitting in silent judgement, thinking that I don’t care enough to breastfeed my son. When the reality is that I am giving up hours every day to pump so that I can give him as much breastmilk as his little body can process.

Maybe I’m wrong. Maybe nobody is thinking those things. But I will admit that thoughts like those have crossed my mind once or twice, and I suspect that I am not the only one. The fact is, we can’t know what is going on in people’s lives. So maybe it’s best to approach everyone from a place of compassion. Of course, people could take advantage of programs like WIC or might formula-feed for the wrong reasons. But how much better and kinder would the world be if we all gave each other the benefit of the doubt before judging? If we all first dealt with the planks in our own eyes?

And now, an only tangentially related photo of the sweet boy who helped me to learn this lesson:

smiling baby

A Sweet Memory from the NICU

I am working on a “mybaby hand two cents” post on baby bottles, and it has reminded me of a moment from our time in the NICU not even two months ago.

Looking back that week, most of it seems a blur of exhaustion and tears. This moment, though, stands out sharply in my memory. I was feeding Jacob. It must have been the first or second day, because the bottle was still new to me and the pain of being unable to breastfeed was still raw. The bottle felt like a wall between us. The nurse came in and saw me quietly crying as I fed him. Understanding immediately the reason for my tears, she took Jacob’s tiny hand and gently guided it to my pinky finger. He grasped on tightly. “There are still ways,” she said, “to connect with him.”

Just call me Jonah

This post is about faith, and what I see as God’s intervention in my life. It is also an extended metaphor, a habit for which I am famous though my methaphors often begin to fall apart rather rapidly. I like to think of that as part of my charm.

Perhaps I should first tell you the story of Jonah and the whale, for those of you who missed that day in Sunday school. Jonah was a prophet who God instructed to go to a city called Nineveh to preach. But Jonah didn’t want to go to Nineveh. I don’t remember exactlwhaley why, but I think he was scared. So he got on the first ship going in the opposite direction, to Tarshish. There followed a series of unfortunate events that ended with Jonah getting thrown overboard and swallowed by a whale. Three days and three nights later, the whale spit him out. At which point he got with the program and headed to Nineveh. I guess three days in a whale’s belly was enough. (As an aside, what do you think would be the worst part of being in a whale’s belly? Is it stinky? Hot? Hard to breathe? Or–oh, horrors!–are you sitting in digestive juices? Also, does a whale have digestive juices?)

I haven’t thought much about this story since I was a child. Reflecting on it now, I can relate to Jonah. As a child, I used to imagine that God’s voice telling him to go to Nineveh was loud and clear (cue booming voice from a cloud: “JONAH! Get thee to Nineveh!!!), but now I’m not so sure. I imagine now that His voice was quiet, so quiet that Jonah was unsure whether he heard it or imagined it, and so proceeded to Tarshish. I also thought as a child that Jonah was a bad man and that he was going to Tarshish to get in all kinds of trouble. Now I imagine that Jonah was, at his core, a good man. I imagine that he intended to do good things in Tarshish. All in all, he was probably just going about his life in what he thought was the right way, even though in the back of his mind, though he didn’t admit it to himself, he knew he was running from God.

When I was in high school, my career goal was to be a pediatric surgeon. This plan emerged from a vague but real desire to help sick children. During my freshman year at college, I followed the pre-med track, and so took courses like Introduction to Chemistry, Genetics, Calculus II, etc. It was during my sophomore year that I decided to abandon medicine in favor of the humanities. My life, of course, then followed a completely different path than I planned as a teenager. I eventually became a teacher and earned my masters in education leadership. I’m not sure at what point I started heading to my metaphorical Tarshish. I’m also not sure that my detour to Tarshish wasn’t part of God’s plan – after all, I met and married my wonderful husband on that road. When I became pregnant, the plan was to put Jacob in day care while I continued to pursue my career goals. But instead I found myself in the whale’s belly – the NICU at Tampa General Hospital. And now I’m on my way to Nineveh.

I say all of that to say this – I don’t know what awaits in my Nineveh. But I do suspect that God has been preparing me for this. Perhaps the desire I had early in life to “help sick children” will be fulfilled through being Jacob’s mother. Perhaps God has something even bigger in mind. Does he intend for me to become an advocate for children with rare diseases like citrullinemia? Am I supposed to go to medical school after all? (Please, God, say no!)

All I know is that in the complete upheaval of my life in the last month and a half, every prayer, large and small, has been answered, some of them by people who may be reading this post, whether or not they know it. If God wanted my attention, he has it. But please, God, one whale is enough for one lifetime. I’m going to Nineveh, and you can tell me what to do when I get there. I promise I’ll listen.